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Vicki’s Voice

my inspiration, my words

In 1987 we began our journey of labor and love. Since then, Jeffrey’s Foundation continues to thrive and it has given me the invaluable opportunity to meet many patients and their families. I have listened to you, communicated with you, and created meaningful connections with you. My inspiration comes from each and every one of you; from North to South, East to West, and everywhere in between. No ocean or border can stop our community from growing together. 

  • Guest Blogger: Rachel Bass's “Badge of Support”

    Advocacy can mean different things to different people.http://downloads.info4pi.org/images/JM---I-am-a-PI-advocate---kristen-resize-609x575-58e2b26fbe1ef-original

    People all over the world are showing their loyalty and contributing towards causes that are meaningful to them, and then passing along the opportunity to their peers.  Today, people love feeling connected to their community and are excited about sharing their message.

    Creativity is soaring and generosity is at an all-time high, people are having fun participating in these acts that are both entertaining and selfless.  It’s moving to see so many people excited about donating their time, their energy, and their funds to a wide array of organizations. 

    The best part, I believe, is that the messages themselves are being passed around – awareness and education are the most important part of any organization and often times, the most challenging.

    As we prepare for WPIW and our Virtual Balloon Launch video, we wanted to provide a symbol for our Community, so that they can wear something to showcase their support for PI patients and families, in a simple and easy way, and without it costing anyone anything… in order for it to be universal.

    Whether it’s an ice bucket challenge, wearing a particular color, or attending a specific event – it’s nice to see that people are enthusiastically participating in activities to acknowledge groups of people that focus on helping others.

    We decided we would create “badges” of support.  In the simplest way, these showcase that the person wearing it believes in spreading awareness and promoting education about Primary Immunodeficiency. 

    These badges can be placed anywhere… on profile photos, posters, cork boards, and everywhere!  Also, they’re super easy to “get”.  Just right click on the badge of your choice and save the ones you want!

    We can wear this message of support and hope with pride and help advocate for patients with Primary Immunodeficiency.

    Maybe you’re a patient, maybe someone in your family is, or perhaps a friend… or maybe you just believe in equal access to treatment for all… together we’ll stand united and have our voices heard and continue to make a difference… and maybe have a little fun doing it!

    I know I’ll be wearing mine… how will you wear yours?

    http://downloads.info4pi.org/images/someone-i-heart-has-PI-resize-581x579-58e2b209df95e-original     http://downloads.info4pi.org/images/JM---PI-advocate---kristen-resize-578x576-58e2b24d5cc4a-original     http://downloads.info4pi.org/images/i-heart-someone-with-PI-resize-580x577-58e2afde63743-original

  • Global PI Village "Spotlight" Series: Bethany Metzroth

    Name: Bethany Metzroth

    When did you start working with the JMF?  Children’s National started working with the Jeffrey Modell Foundation in 2014. One of our social workers in our Blood and Marrow Transplantation Unit was worried about how we were going to support the basic needs of a family under our care.  She heard great things about the Roots & Wings program so she reached out to Vicki.  Our social worker was amazed by the generosity, kindness, and responsiveness of the Jeffrey Modell Foundation.  A couple months later I had the pleasure of meeting several members of the foundation.  I’ve grown to love each and every one of them.  When we visit with Vicki, Fred, and Vanessa it feels like we’re with family – we’re bound by a passion and commitment to the most important mission of all – children’s health!

    Profession and Location:  Development, Children’s National Health System, Washington, DC

    What inspires you?  The patients and families we care for inspire me!  Kids are so resilient and brave, and their parents are the greatest advocates. They become experts in a disease that was once foreign to them and somehow remain positive in the wake of heartbreaking news.  Their determination and love for one another inspire me, as does the clinical team and researchers who are constantly searching for better treatments.

    What aspect of JMF do you find most special?  Jeffrey Modell Foundation is unique in that it is committed to all aspects of the primary immunodeficiency community – supporting efforts in advocacy, education, research, patient care and support services. JMF recognizes that when a child is sick it affects so many things and the foundation is committed to every child with the disease.

    What’s your favorite JMF memory?  I love sitting around the Jeffrey Modell Foundation conference room and sharing stories with the team.  Vicki and Fred remember every child, every family, and every researcher they’ve met. Their stories inspire our team to do more!  I love our time together.

    Favorite Quote:  “Be the change that you wish to see in the world” – Mahatma Gandhi

    Share a little bit about yourself with the JMF community!  I have worked at Children’s National for over 6 years now.  Before joining Children’s National as an employee I was a patient care volunteer.  The hospital feels like home to me. I grew up in Washington, DC and visited the hospital many times as a young child as my dad works there as a cardiologist. Whenever I am there I am reminded of how fortunate I am. That is why I am devoted to improving the lives of the children we treat.

  • Global PI Village "Spotlight" Series: Dr. Michael Keller

    Name: Michael Keller

    When did you start working with the JMF?  I first began working with the Jeffrey Modell Foundation after receiving a Translational Research Award to support my group’s work in adoptive T-cell immunotherapy to combat viral infections in patients with primary immunodeficiency.  This award was really instrumental in allowing us to begin several of our clinical protocols. 

    Profession and Location:  Pediatric Allergy & Immunology, Children’s National Medical Center, 111 Michigan Ave NW, Washington, DC 20010, Tel 202-476-2140, Fax: 202-476-2280

    What inspires you?  I really enjoy reading biographies, and am most inspired by those who succeed through hard work and intellect, but can also put aside their ego in order to achieve their goals.   Lincoln is a particular hero of mine – I loved “Team of Rivals.”   I have also been extremely blessed to have outstanding mentors over the course of my career – Drs. Rebecca Buckley, Kate Sullivan, Jordan Orange, and Catherine Bollard - and I look up to all of them as models of what successful physician-scientists can accomplish in our field.                    

    What aspect of JMF do you find most special?  I love the dedication of Vicki, Fred, and everyone at the Jeffrey Modell Foundation to improving the lives of children with primary immunodeficiencies.  They are such extraordinary advocates for our patients, both in supporting advances in science and in directly helping our families through programs like Roots and Wings.  

    What’s your favorite JMF memory?  The first time that I heard Vicki and Fred speak about Jeffrey, and about the founding of the Jeffrey Modell Foundation, was at their dedication of the endowed chair position for my mentor, Dr. Jordan Orange.  That was really touching and inspiring. 

    Favorite Quote:  “An investment in knowledge pays the best interest” –Benjamin Franklin

    Share a little bit about yourself with the JMF community!  When I’m not at the hospital or in the lab, I’m either spending time with my wife and son, traveling, or working out.  I’m a lifelong student of several martial arts, which I still practice.  

  • Global PI Village "Spotlight" Series: Pere Soler-Palacin, MD, PhD, MsC

    Name: Pere Soler-Palacin, MD, PhD, MsC

    When did you start working with the JMF?  We started data sharing in 2007 and have been recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies in 2016

    Profession and Location:  Pediatric Immunologist. Head of the Pediatric Infectious Diseases and Immunodeficiencies Unit, Hospital Universitari Vall d'Hebron, Vall d'Hebron Research Institute (VHIR), Assistant Professor, Universitat Autònoma de Barcelona (UAB), Barcelona, Catalonia, Spain.

    ++

    What inspires you?  In my daily work, there are two main sources of inspiration. The first is the feeling that nothing can be as important as saving a child’s life. That led me more than 20 years ago to start my studies in Medicine and Pediatrics and remains as a leitmotiv running through my mind.  The second is the personal need to reach the excellence in my daily practice. It does not matter if we are talking about medical care, research or teaching, I always try to do my best since many people are expecting that from me.

    Moreover, my beloved family encourages me to keep on struggling for PI patients and their families.

    What aspect of JMF do you find most special?  The JMF is not a foundation to me, it is a family and I am so proud to be a little part of it. When I first met Vicki and Fred, I realized that they would do anything they could to help patients with PI and their families independently of the place in the world they were living, their gender, sex or economic status. They will always look for you whatever you may need.

    What’s your favorite JMF memory?  I have to admit that my favorite JMF memory comes from the dedication day at our center. It was an incredible mix of feelings. I was so proud to show Vicki, Fred and Vanessa our clinics, all the professionals, the patients and their families… and, at the same, time I got really nervous just thinking that something could have gone wrong. At the end, it was a wonderful day that all the people involved in the care of patients with PI will remember during all their life.

    Favorite Quote:  Doing what you like is Freedom, liking what you do is Happiness

    Share a little bit about yourself with the JMF community!  I have been a pediatrician for almost 15 years working in the field of infectious diseases and primary and secondary immunodeficiencies. I am so lucky to work with a group of incredible professionals at my hospital.  We share our devotion for patients and work as a team to offer our best to patients and their families.

    I have lived in Barcelona, Catalonia, since I was born and I love my little country and its history passionately.  It is not surprising that I love the sea and if I could just ask for a single moment in my life, I would choose sharing a good dinner beside the sea with my family and friends.

    http://downloads.info4pi.org/images/vfm-and-pere-resize-900x1065-5804ff7546c51-originalJMF Co-Founders, Vicki & Fred Modell along with Dr. Pere Soler-Palacin
    at the Jeffrey Modell Diagnostic & Research Center Dedication
    at Hospital Vall d'Hebron in Barcelona, September 20, 2016.

    http://downloads.info4pi.org/images/5a-resize-900x506-5804fe40ac71f-originalPrimary Immunodeficiency Team at Hospital Vall d'Hebron!

  • Guest Blogger: Rachel Bass “Getting Ready for WPIW 2016”

    World Primary Immunodeficiency Week 2016 is rapidly approaching and I am getting very excited for a week of celebrating the Primary Immunodeficiency community!

    It’s amazing to see how WPIW has grown! It’s been three years since its global recognition and implementation, and this week of awareness has become a wonderful and uplifting symbol of hope for the future of patients everywhere!

    Last year was the first time I participated and celebrated WPIW.  I had heard wonderful stories and seen many great pictures from past events, and I was excited to experience it for myself.

    I was truly blown away by the amount of support we received!  There were so many people joining together and embracing the community –physically at JMF Global Balloon Launch sites, as well as through our social media channels by planting Appreciation Garden Flowers, attending the JMF Virtual Party and “Bursting the Bubble” about PI!

    Aligning yourself with such an important cause and message of support and hope is something I’ve found to be very special.

    There’s an expression… “From the outside looking in you could never understand it… and from the inside looking out you could never explain it.”  This perfectly describes my WPIW experience… I never realized how fulfilling participating in an event like this would be, and for someone who is never short on things to say... trying to describe it isn’t as easy as I thought! 

    This will be my second WPIW and now that I’ve experienced the celebrations, I am even more excited for 2016!  I encourage all of you to participate in WPIW in any way you can! You can hold your own event, you can participate in a JMF initiative, or you can spend time with someone you know who is affected by Primary Immunodeficiency.  That’s the best thing about support… the options are infinite and nothing is too small!

    Join in on the fun by selecting a Jeffrey Modell Foundation initiative below, and together let’s make World Primary Immunodeficiency Week 2016 the biggest, best, and brightest we can!
         * Appreciation Garden
         * “Burst the Bubble” About PI

    http://downloads.info4pi.org/images/world-pi-week-globe-as-O-and-JMF-flag---grey-resize-805x179-570bfa0891101-original

  • Triathlon-ing for a Cause, our dear friend Dina LaVigna

    Every year athletes from all over come to Ventura California to participate in the Dina La Vigna “Breath of Life” Triathlon.  The event was created in the loving memory of Dina LaVigna, a special and dear friend of ours, who lived with Primary Immunodeficiency throughout her short life.

    The mission of the event is to raise funds, and most importantly, to raise awareness and celebrate Dina’s strength, courage, and “glow.”

    Dina’s spirit lives on through the athletes and participants, and her memory is honored by those who receive the help and support generated from this amazing and emotion-driven event.  I encourage you to learn more about this annual event and Dina LaVigna herself, at www.dinatriforlife.com.

    http://downloads.info4pi.org/images/Dina-La-Vigna-resize-165x165-56fec0ec4e3fb-original

  • Guest Blogger: Fred Modell “When I Grow Up…”

    What do YOU want to be when you grow up?

    http://downloads.info4pi.org/images/FM-blog-post-grey-resize-900x403-5696bd1693bee-original

  • Estamos haciendo algo in Latin America; Our trip to LASID 2015!

    http://downloads.info4pi.org/images/lasid-logo-resize-226x126-533edd106459a-originalEstamos haciendo algo in Latin America!

    I have always been motivated by my son Jeffrey’s request to “Do Something!” and the Jeffrey Modell Foundation was created with that intention.

    One of the many ways we help honor his request is to stay involved and informed on all things Primary Immunodeficiency and Immunology.  This includes meeting with physicians and advocates from all over the world who share our commitment to help cure PI worldwide.

    On November 15, Fred and I, along with JMF Executive Director, Vanessa flew to Buenos Aires, Argentina for the 2015 LASID (Latin American Society for Immunodeficiencies) meeting.

    The biennial LASID meeting is the largest Primary Immunodeficiency scientific event in Latin America!  This amazing and beautiful event brings together physicians, researchers, healthcare professionals, and patient advocates, for one common goal – to share the advancements in our understanding of the Immune System, specifically Primary Immunodeficiencies and treatment options.

    To our heartfelt surprise, the conference opened in a very different but very special way, a video tribute honoring Fred, myself, and Jeffrey’s Foundation.  There are no words to adequately express the appreciation and gratitude for this beautiful honor. We were completely surprised when the lights dimmed and the video came on.  Both Fred and I were holding on to each other tight for fear we would be too emotional… which we were, anyway. 

    What we did know before the meetings is that both Fred and I were personally asked to Chair sessions at the YOUNG PHYSICIANS EDUCATION DAY.  Attending these meetings and learning so much about what these young physicians are achieving is so rewarding, but to participate as a Chair alongside brilliant Expert Immunologists is an experience I am truly grateful for.

    These young physicians, many of whom have studied or done research fellowships internationally, have returned to their home country to initiate programs in clinical care, diagnostic laboratories, and research.  We have encouraged many of these young physicians by providing travel grants, fellowships, financial awards, and research funds.  We are constantly impressed with their courage!

    The people of Latin America, who have great passion for their food, wine, language, music, arts, and dance, have the same passion for medicine!

    The conference was attended by some of the most brilliant minds and dedicated souls in Immunology and filled with wonderful and insightful meeting sessions covering many different aspects of Immunology. To be recognized in such amazing ways, among such an exquisite, distinguished and passionate group of people is an honor I will never forget and will cherish forever.

    Since its inception, Jeffrey’s Foundation, in collaboration with many of the LASID attendees have advanced the way people with Primary Immunodeficiency are diagnosed and treated. We have dedicated our lives to helping patients with Primary Immunodeficiency receive the earliest possible diagnosis, and access to meaningful and adequate treatments, which will lead to a better quality of life and even life itself.  To experience and see firsthand how LASID is driven by our same mission is truly moving.

    We are so proud of everything our community has achieved and how far we’ve come, and I know Jeffrey would be proud of how we are fulfilling his request to “do something.”

    From the bottom of my heart, I want to say “muchas gracias” to LASID and all its attendees for making this a most wonderful and memorable event for myself, Fred, and the Jeffrey Modell Foundation.

  • “Doing Something” Special at Children's National in Washington, DC!

    The beginning of the Foundation’s story starts with Jeffrey asking us to “Do Something!”http://downloads.info4pi.org/images/DC-dedication_2-resize-400x600-562015fec3852-original

    You’ve heard our mission before, “to dedicate our efforts to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and newborn screening.”

    The first step in that mission is to identify expert immunologists who share a passion for helping others, especially PI patients and their families.  It is very fulfilling to find these wonderful physicians and work together to establish Jeffrey Modell Research and Diagnostic Centers for them to lead; and we’ve been lucky enough to have multiple locations in the US and around the world!

    I am proud to share that just recently we opened another Center, to be led by a very talented, compassionate, and amazing physician – Dr. Michael Keller, from Children’s National Medical Center in Washington, DC.

    Dr. Keller is a pediatric immunologist and specializes in Immunodeficiencies.  Not only is he a highly respected research physician and the recipient of many prestigious awards – he’s as nice as can be!

    This new Center in Washington, DC provides us with the opportunity to improve the lives of those affected by PI in our Nation’s Capital.

    Fred and I are thrilled that JMF is partnering with Dr. Keller and Children’s National. This is a most welcome addition to the Foundation’s Network and we are so excited, proud, and honored to work alongside him, as we continue to “Do Something” for the PI Community.

    We're happy to share the blog post from Children's National covering this wonderful dedication!

  • Steve Bursley’s “One Tough Ride”

    On Saturday, September 19th, our friend and hero, Steve Bursley, will be embarking on his traditional “One Tough Ride”, dedicated to his son Nicholas who has Primary Immunodeficiency. 

    Steve will compete in a 508-mile nonstop bicycle race – the Silver State 508 in Nevada, which is considered to be one of the toughest endurance challenges around.  Helping promote PI awareness is only half of what Steve does, he’s also an inspiration! “One Tough Ride” encourages everyone, PI patient or not, that you can achieve anything you put your mind to, even if it seems all “uphill”.  

    “This challenge is personal but the impact is global, and I'll be racing for all of the children and adults around the world that battle PI diseases every day!” – Steve Bursley

    You can virtually experience Steve’s bike race as he will be sharing photos and posts live via his Facebook, Twitter, and Instagram accounts all throughout this 508 mile journey!   You can watch coverage of the race via webcast and even watch the actual race unfold using live track to see Steve’s team, the Racing Roosters compete!  

    Steve’s devotion to his son, Nicholas and his passion to bring attention and support to the PI Community is truly inspiring. We are so proud of Steve and this event, and excited for the opportunity to come along for the “ride.”

    Don’t forget to connect and keep up with Steve! Support him and wish a safe “ride.” There are many different channels were you can learn more about his “One Tough Ride” event and his mission to create awareness of Primary Immunodeficiency.

    Steve Bursley, One Tough Ride

    Silver State 508 Event

  • 2015 WPIW JMF Photo Contest Winners!

    World PI Week 2015 was truly magical!  The Global PI Community was truly united by “one voice, one mission” and we are in awe of the dedication, passion, and commitment from countries all over the world!

    Watching how people participated in our simultaneous Balloon Launch is a tradition that will never get old!

    We are happy to announce the winners of our WPIW Balloon Launch Photo Contest! All of the 800 photos we received from all around the world were beautiful and meaningful and helped promote awareness and education about Primary Immunodeficiency.  They were all excellent, and we had a very difficult time choosing the winners.  Thank you to everyone who planned imaginative events to help make World PI Week 2015 amazing!

    The 6 photos below were the ones that inspired us and truly captured our mission of “Hope, Advocacy, and Action”. Several of them, in their profound simplicity, say so much.

    Congratulations and thank you to the compassionate and creative people everywhere who participated!

    Timișoara, Romania

    http://downloads.info4pi.org/images/Timișoara--Romania-resize-602x597-559451107df91-original

    Reykjavik, Iceland

    http://downloads.info4pi.org/images/Reykjavik--Iceland-resize-650x442-5594511918add-original

    Astana City, Kazakhstan

    http://downloads.info4pi.org/images/Astana-City--Kazakhstan-resize-650x443-55945120af437-original

    Cairo, Egypt

    http://downloads.info4pi.org/images/Cairo--Egypt-resize-602x407-559451265c271-original

    Shanghai, China

    http://downloads.info4pi.org/images/Shanghai--China-resize-602x458-5594512b9fb2f-original

    Nablus, Palestine

    http://downloads.info4pi.org/images/Palestine-resize-410x709-559462cd01e69-original

  • World PI Week 2015

    Wow. World Primary Immunodeficiency Week 2015 has come to a close, and what an amazing and inspiring week it was!

    Thank you, to all of you, who helped make this year so special. Whether it was attending our Virtual Party, participating in a Balloons and Bubbles Launch, helping us “Burst the Bubble” about PI, or contributing to our Appreciation Garden.

    Over the last twenty eight years, Fred and I have watched the advancements in the way people with Primary Immunodeficiency are diagnosed and treated.  And every year Fred and I am more and more amazed at the amount of support our community is shown from all over the world.

    We have watched WPIW grow into an international celebration that truly unites patients, families, friends, physicians, nurses, and healthcare professionals to raise awareness and provide education about PI in order to achieve earliest possible diagnosis.

    WPIW is a celebration of how far our community has come, while also keeping us motivated for the future.  Every year WPIW is so special and there are so many reasons why it is so special and important to us..

    • Together we have and continue to make a difference
    • Together we have and continue to bring awareness around the world
    • Together we empower children, parents, families, friends, educators, nurses, and doctors
    • Together we acquire answers for tomorrow
    • Together we build memories along the way
    • Together we save lives so today’s kids can be tomorrow's future
    • We believe there are no limits and no borders
    • We believe in our community and you believe in us
    • We believe in our mission, and our mission is not complete

    ..But most of all, Jeffrey would have wanted it this way.

    From the bottom of my heart, thank you so much for making WPIW as amazing and special and wonderful as it was.

    http://downloads.info4pi.org/images/VFM_FINAL-resize-900x675-5549303ca4dd9-original

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Jose R. Regueiro

    Name: Jose R. Regueiro

    Tell us about how you learned about JMF and World PI Week! I met Vicky and Fred many years ago in Geneva and have followed their incredible efforts to build what JMF now means worldwide, including the World PI Week.

    Profession and Location: I am a Professor of Immunology working in Madrid, Spain, at the Complutense University and the Hospital 12 de Octubre Research Institute. I happen to be the Head of the Department of Immunology there, and also the President of the Spanish Society for Immunology.

    +++

    What inspires you? The need to understand primary immunodeficiencies (PID) and how what we learn can in turn help patients and their families, and change our view of the immune system. Every new case is a professional challenge, but I never forget the human factor: I try to think on the patient first.

    What does World PI Week mean to you? It is a time to raise awareness for PID and to celebrate how far we have reached in our understanding of their causes and what that means to patients in terms of prompt diagnosis and treatment.

    What’s your favorite World PI Week memory? Last year we launched balloons with friends, students, colleagues, patients and their families. It was a magic moment, all of us looking upwards in hope of a better future, particularly for underdeveloped countries.

    Favorite Expression: Put an immunologist in your life.

    To Sum Up! My first contact with PID was a patient called Victor back in 1985, who presented with an extremely rare disorder which turned out to be the first T lymphocyte-specific PID to be molecularly characterized (CD3gamma deficiency). Meeting Victor changed my view of Immunology. Thirty years later, I still keep in contact with his family. Along the way I met several top-notch researchers from all over the world, such as Cox Terhorst, Balbino Alarcon, Fred Rosen, Max Cooper, Alain Fischer, Gigi Notarangelo, Chaim Roifman, Wolfgang Schamel and Jean-Laurent Casanova. I feel honoured to be a small part of the PID community, and to be helpful for patients and colleagues from all over the world.

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Andrew Cant

    Name:  Professor Andrew J Cant, BSc, MD, FRCP, FRCPCH

    Tell us about how you learned about JMF and World PI Week!  The Royal Victoria Infirmary is one of 3 Jeffrey Modell Diagnostic and Research Centre for Primary Immunodeficiencies, here in the UK so our frequent contacts meant we were well aware of this important opportunity.

    Profession and Location: Consultant in Paediatric Immunology & Infectious Diseases  / Director of the Children's Bone Marrow Transplant Unit  / Professor of Paediatric Immunology - University of Newcastle / Clinical Senate Chair – NHS Northern England

    What inspires you?  Understanding the biology of PIDs is fascinating and working with children is very rewarding, but when you put these two aspects of medical care together I am completely captivated! It is simply such an amazing privilege to use our rapidly growing knowledge of these diseases to enable children to have normal exciting fulfilled and happy lives when previously they could only expect worsening debility, ill health and for many an early death.

    What does World PI Week mean to you?  Our daily work with PID patients, their families and our network of specialists, is rewarding but challenging.  WPIW encourages us to focus on the goals of our centre and there is a strength in sharing this week promoting PIDs with a global network, knowing collectively we are all championing the same cause.  Through WPIW activities we have been able to raise interest in PID across the north of Britain and Ireland amongst Paediatricians and Physicians.  We feel being part of this unique network ensures 30 million people have closer access to diagnosis and bespoke care for PID.

    What’s your favorite World PI Week memory?  Here in Newcastle we held a networking event as part of World PI Week in 2014. This event brought together doctors and nurses from 6 medical institutions across the north of the UK.  The new concept of bringing together our peers in this way was very exciting as we could discuss puzzling cases in depth and draw in cases and hospitals who had not been involved before. This has enhanced our network of outreach PIC clinics in Scotland, Ireland, Manchester, Leeds and Sheffield so that have a much more mature and robust way to disseminate knowledge and expertise.

    Favorite Quote:  “Together we can do the impossible!”

    To Sum Up!  I have been a doctor for over 35 years and after working in the field of internal medicine and infectious diseases, I “crossed the floor” to paediatrics and immunology some 30 years ago. It has been wonderful to work with a group of patients where you can make such a difference, helping on the “upward slope” to healthy well being. I have always wanted to know the answer to “why”, “what if”, “what would happen if” and “why couldn’t we try this” so I love the mix of looking after patients and trying to find out more about the conditions they suffer from, and better ways of curing them. This is such an exciting time with so many new research findings that make a real difference to patients, so I remain the excited curious little boy at heart!  I live in the far north of England amidst beautiful countryside and close to some spectacular coastline, so it isn’t surprising that I love the outdoors, hiking, walking biking and running. I also greatly enjoy music and history, and am very fond of Scotland where most of my family live.

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Maria Kanariou

    Name:  MARIA KANARIOU

    Tell us about how you learned about JMF and World PI Week!

    • “Member” of WHO and IUIS meetings for Primary Immunodeficiency Diseases in the past.
    • “Contact Person” of JMF in Greece
    • IPOPI meetings
    • Medical Director of “ARMONIA” -  Patient Organization of Friends Patients with Primary Immonodeficiencies - Paediatric Immunologogy
    • Friendship with Vicki and Fred Modell !

     

    Profession and Location: Head Director, Department of Immunology and Histocompatibility, Specialised & Referral Center for Primary Immunodeficiencies - Paediatric Immunology, “Aghia Sophia” Children’s Hospital, Thivon & Papadiamantopoulou Str, 115 27 Athens, Greece (Phones:  +306944675007, +302132013766)

    What inspires you?

    • To understand the function of Immune System order to treat patients with Primary Immonodeficiency aetiologically.
    • The improvement of quality of life of patients’ with Primary Immunodeficiency and their families

     

    What does World PI Week mean to you?

    • The increase of awareness for early diagnosis of Primary Immunodeficiencies
    • The improvement of quality of life of patients’ with Primary Immunodeficiency and their families.

     

    What’s your favorite World PI Week memory?  I can speak only for events in Greece and my favorite one was a concert with Symphony Orchestra of Athens in 2011.

    Favorite Expression: Awareness!  Test. Diagnose. Treat.

    To Sum Up! I admire Vicki and Fred. As they say: ”their son,  Jeffrey, changed their lives forever, along with the lives of thousands of people he would never meet”.    I feel member of JMF community and I have memories of many of JMF important scientific symposia.   The celebration of 25th anniversary was the most significant one!

  • Come Take a Look at My Appreciation Garden!

    I’ve always loved flowers; there are so many different kinds, with different colors, shapes, and sizes – just like people!http://downloads.info4pi.org/images/flowers-resize-816x420-55229ac4afa2a-original

    Let’s take the time to honor those who mean so much to us and who have made this year so special.

    Pick a flower, as many as you would like, and write the name of someone you are thankful for in the center and why you’re thankful for them in the petals.

    Print out your flowers and share them our Facebook page, tag us, or email us at info@jmfworld.org and together we can create an Appreciation Garden!  Don’t forget to use the #JMF hashtag.

    Join us, won’t you? Find your flowers here to help grow our garden!

    And now I invite you to take a look at the beginning of my garden, and see who I’m appreciative of, as well as the people who are important to the Jeffrey Modell Foundation team!

    http://downloads.info4pi.org/images/staff-flowers_VV-resize-900x675-5522e2176a493-original

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Liliana Bezrodnik

    Name: Liliana Bezrodnik

    Tell us about how you learned about JMF and World PI Week! When I began to work with the LAGID members I received the information about the excellent job of Vicky and Fred and their help to diffusion of PID and the work about PID and research of immunologist physician.

    An active member of LASID I learned of World PI Week and My team and I work together in my country to do the diffusion about it. 

    Profession and Location: Doctor and Head of Immunology Unit at Ricardo Gutiérrez Children’s Hospital Buenos Aires, Argentina

    What inspires you?  I want to help my patients and their family and to do the diffusion of PID in Argentina because I know exist more PID in my country without diagnosis and their need to do it.

    What does World PI Week mean to you? The opportunity to teach and to do the diffusion of PID.  To also accompany our patients and family so they do not feel alone.

    What’s your favorite World PI Week memory?  The last year was the favorite for me

    Favorite Quote: The PID are important diseases that compromise the health but with the early diagnosis and the treatment they can live in health

    To Sum Up! My team and I work hard to help our patients for their diagnosis and treatment and to do the diffusion of PID in Argentina.  We do the different activity to teach about PID in the medical community and to help the patients and their family to understand about their diseases and the important their receive the treatment.

    You can see our activity in the facebook page and the testimony of the patients: Inmunodeficiencias Primarias en la Argentina. Dra. Bezrodnik y equipo

    In yoube to you can see: "el maravilloso mundo del señor SI". I wrote the story "El señor SI" (señor sistema Inmune)

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Ruth Herrera

    Name: Ruth Herrerahttp://downloads.info4pi.org/images/JMF-Balloons-resize-228x250-533edcec9943c-original

    Tell us about how you learned about JMF and World PI Week!  Ten years ago I started working for Dr. William T. Shearer as his administrative support.  While working in his office on the avalanche of e-mails, I received an e-mail from his very dedicated Allergy and Immunology Clinic team, they were putting together a “JMF Kids Day” and needed volunteers.  Being new and wanting to get involved in “office” activities, I signed up to volunteer.  I didn’t know what this day was about, where it originated or who it was for.  I knew this day was for our patients and help was being requested, which was all I needed to know.  Once I was onboard, I started asking question and was very touched by the answers I was given.  What a beautiful act of kindness and generosity did Fred and Vicki Modell provide for children and families they don't know. I was given the opportunity to participate in a day when a child and parent are worry free for a day, I saw how excited the patients were to attend the outing with their loved ones (and loved health care providers) and they shared their special day with other children that know what each other is going through; what an eye opener!

    Three years ago, the Allergy and Immunology Service was very fortunate to have Dr. Jordan S. Orange join the Texas Children’s Hospital family as the new Service Chief.  He didn’t bring any cold weather with him, instead he brought a Texas size vision on what we can do to improve our patient care in all aspects- clinical, administrative, research and outreach; not only for the Texas Children’s Hospital patients, but to the entire southeast region of Texas and beyond. 

    The Immunology, Allergy and Rheumatology Service celebrated our first World PI Week April 2013. We had a great turn out, Dr. Orange gave some brief remarks, and we released our balloons, a delightful event.  However, the following year, we had bubbles and balloons and cake! All of this brought out the kid in us, we had an even bigger turn out, an ex-patient and current patients! Keep sending the bubbles!

    On Friday, August 23, 2013, we had the honor of being named a Jeffrey Modell Diagnostic and Research Center, where I met Mr. and Mrs. Modell. Unfortunately, I was too caught up in the whirlwind of event details (typical administrative coordinator disease) to stop and tell them how admirable I think their work is.  Thank you Mr. and Mrs. Modell.

    Profession and Location: Senior Administrative Coordinator, Texas Children’s Hospital, Houston, Texas.

    What inspires you? On a professional level, the entire Immunology, Allergy and Rheumatology Service.  On a personal level, my family and faith.

    What does World PI Week mean to you? The opportunity to reach out and educate at least one person on the importance of this mission.

    What’s your favorite World PI Week memory? On a beautiful day in April 2014 the Immunology, Allergy and Rheumatology Service gathered to kick-off, World PI Week. Joining us was a former immunodeficiency patient, now a doctor at Texas Children’s Hospital and a current young patient. What better proof did we have in front of us to see how far we have gotten and what more we can offer our new patients.  Together we all stood, blowing bubbles with smiles on our faces and releasing hope and awareness to the world. 

    Favorite Quote: “Where there is a will, there is a way.”  While this may not be the most inspiring quote, I apply it to my everyday life.  It helps me look past obstacles and focus on solutions.

    To Sum Up! My name is Ruth Herrera, I was born and raised in Omaha, Nebraska.  I moved to Houston 11 years ago and had the good fortunate to work for Dr. Celine Hanson at the Texas Department of Health. One thing led to another and I found myself working at Texas Children’s Hospital for amazing people.

    True to my culture, I’m always surrounded with family.  We travel, shop, and gather frequently.  On my down time, I enjoy reading.

    I wake up every morning thankful for all of my blessings.

  • “What Do You Do with an Idea?”

    When Fred and I decided to establish Jeffrey’s Foundation, we knew it was both a grand idea and a challenge.  We had never met anyone else with Primary Immunodeficiency and the knowledge, support and information networks were less than perfect.  Yet, this is why we knew it was so important to proceed… it was time to “Do Something!”

    Recently, Kobi Yamada’s “What Do You Do with an Idea?” was given to me as a gift, and I have not been able to stop thinking about the message it conveys.

    At the opening of the book, the reader is asked…

    http://downloads.info4pi.org/images/what-do-u-do-w-an-idea-resize-328x132-54f71c03ed1bc-original

    When we allow ourselves to dream, to be inspired, and not give in to intimidation and fear – these dreams can grow into miraculous realities. If we nurture our ideas, they can become larger than we ever expected; there can be an exponential amount of potential and growth!

    Our idea was to create a Foundation where we could help spread awareness, increase education, help make strides in PI research and knowledge, as well as, provide patient support.  This idea to “Do Something” has manifested into a worldwide network of physicians, patient organizations, public service announcements, international educational materials, research programs and so much more!

    We turned our idea into Hope, Advocacy, and Action.

    We are excited to see what the future will bring and how Jeffrey’s Foundation will continue to grow.  We have never and will never stop working towards our dream, and we hope you never give up on yours.

    To acquire Kobi Yamada’s “What Do You Do with an Idea?” click here: http://www.amazon.com/What-Do-You-With-Idea/dp/1938298071

  • Global PI Village "Spotlight" Series: Grant Ginsberg

    Name: Grant Roberts Ginsberg

    When did you join JMF? I joined JMF in July of 2014.http://downloads.info4pi.org/images/Boy-Reaching-for-the-Star-resize-120x174-533edc58223bd-original

    Role: Senior Program Director. My role includes marketing our SPIRIT 2.0 Analyzer, Pharmaceutical outreach, and helping coordinate the Jeffrey Modell Infusion Center project.  

    What inspires you: I had the pleasure of unexpectedly meeting Vicki and Fred Modell this past summer. I was introduced to the Modell’s through a mutual friend, while we were eating out at an Italian restaurant in New York. I immediately connected with Vicki and Fred on both personal and professional levels. Their lifelong journey and story truly resonated with me. I believe that their son Jeffrey chose me to meet Vicki and Fred on that particular night. I keep a picture of Jeffrey at my desk which is a continuous reminder to work as hard as I can, on his behalf. Vicki and Fred have truly inspired me to live for something greater than myself.

    What aspect of JMF do you find most special? The work I do at JMF gives me the most fulfilling feeling at the end of the day. Knowing that I am helping save children’s lives is the most gratifying feeling. The global presence of JMF is truly unbelievable and being relatively new to JMF, I have the utmost respect for Vicki, Fred, and the rest of the JMF family.

    What’s your favorite JMF memory? I love hearing about the stories of children’s lives that have been saved through JMF’s efforts, particularly through Newborn Screening.

    Favorite Quote: “You only live once, but if you do it right, once is enough. “ -Mae West

    To Sum Up! I grew up in Rabat, Morocco and went to college at Indiana University. I love to travel, workout, read, and discuss politics/current events. I am a very easygoing guy.

  • School Nurses: Our “First Line of Defense” Against Primary Immunodeficiency!

    We all remember going to the School Nurse as a child, whether we had a tummy ache or looking for a lollipop.

    However, let us not forget the vital role of a School Nurse.  School Nurses reach 98% of the 50,000,000 students in U.S. public schools, grades K-12. 

    Quite often, School Nurses are the “first line of defense,” in recognizing that these children suffer from repeated infections and missed days at school.  They are the first point of contact when our children aren’t feeling well.

    This is why Jeffrey’s Foundation partnered with the National Association of School Nurses; to help assure earliest possible diagnosis of Primary Immunodeficiency in school children!

    We sent English and Spanish language posters featuring the Immune System and our 10 Warning Signs of PI to approximately 16,000 NASN members!

    Educating School Nurses about the Immune System and the 10 Warning Signs of Primary Immunodeficiency will lead to early and precise diagnosis, appropriate treatment and improved quality of life.

    Now, when a child goes to the Nurses office time and time again, they will be able to recognize symptoms that may be one of the Warning Signs.  This will help children and their families find answers and accurate diagnoses.

    Education leads to greater Awareness; Awareness leads to Diagnosis; Diagnosis leads to appropriate Treatment; Appropriate treatment leads to a better quality of life.  Working with the National Association of School Nurses takes us a one step closer to fulfilling this mission!

    http://downloads.info4pi.org/images/10-WS---Immune_English-resize-721x480-54db7270b8942-original

    http://downloads.info4pi.org/images/10-WS---Immune_Spanish-resize-730x480-54db72793e8f4-original

  • Guest Blogger: Catherine Jackson "The Awe & Wonder of a Three Year Old Boy…"

    The Awe & Wonder of a Three Year Old Boy…

    Just recently we received a wonderful email surprise. Remember Jared? The young boy who was the first child to be approved through our “Roots & Wings” Program in February 2012! The baby who was screened in Puerto Rico for SCID! The baby who was under Dr. Trudy Small’s care at Memorial Sloan Kettering in New York City! Yes! Him! That wonderful and delightful young boy that we are so proud to have met and continue to see grow. Hearing of all his life updates brings us all such joy.

    Jared continues to live in Puerto Rico with his mom and dad. They visit us here at the JMF office quite often and it’s always a delight. After the holidays we were sent various pictures but wanted to share with the world just a few of how grown-up he is looking recently. It seems his favorite character is Spiderman. (Did you zoom in to take a good look at his Spiderman bike? How cool is that?) Spiderman's creators gave him super strength and agility, and from what we know, Jared, too, has super strength and agility. To be able to live a SCID FREE LIFE… we think that’s POWERFUL! 

    http://downloads.info4pi.org/images/jared_3-resize-617x327-54cb912fd2425-original

  • Global PI Village "Spotlight" Series: Dr. Ridha Barbouche

    Name:  Ridha Barbouche

    When did you start working with the JMF?  Since 2008 at a symposium entitled ‘’PIDs beyond Europe’’ during the ESID meeting which took place in The Netherlands.

    Profession and Location:  M.D., Ph.D. Professor of Medicine at the Medical School, University of Tunis El Manar, Head of Department and Director of Research Laboratory at the Institut Pasteur de Tunis, Tunis, Tunisia

    What inspires you?  To progress in anything I do, including helping provide a better life for patients and their families.

    What aspect of JMF do you find most special?  The opportunity to share experiences and knowledge with a fantastic community of colleagues, facilitated by brilliant hosts and friends of everyone.

    What’s your favorite JMF memory?  The contribution of Vicki and Fred to the second ASID meeting in Hammamet, Tunisia which translated their permanent commitment to advance PIDs cause everywhere.

    Favorite Quote:  ‘’There is hope…always!’’

    To Sum Up!  I grew up in the small island of Jerba in Southern Tunisia, I think that the marvelous Mediterranean sea around me –beautiful and mysterious- had a major impact since then on my permanent quest to better discover, understand and appreciate people and things around me and beyond.

  • Reflection.

    The beginning of a new year is upon us, and as always, it’s a time of reflection… where have we been, where are we now, and where are we going..?

    2014 has been a remarkably successful year for Jeffrey’s Foundation, and I am so proud of all that has been accomplished!

    The Jeffrey Modell Centers Network now includes more than 600 physicians at 248 academic institutions, in 206 cities, 78 countries, spanning 6 continents and we’re still growing!

    Nine states, including Illinois, Maine, Nebraska, New Jersey, New Mexico, Oregon, Rhode Island, West Virginia, and Wyoming, as well as the District of Columbia, have implemented mandatory Newborn Screening for SCID, bringing the total to 26 states!

    We have also significantly invested in research this year.  The Translational Research Program awarded five grants, our Specific Defect Research Program awarded two grants, and our very first CHILDREN!® program launched, and we awarded our first grant!

    This year we have also made strides in the way we have further strengthened and spread our mission through our Scientific Publishings; An analysis and decision tool to measure cost benefit of newborn screening for severe combined immunodeficiency (SCID) and related T-cell lymphopenia., and Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery.

    JMF “KIDS DAYS”, days of sharing, caring, and hope, create events outside of the hospital, where patients, their families, and the physicians and nurses can relax and enjoy fun activities, while also connecting with each other and often making friendships that last forever.  This year we were able to host 15 “KIDS DAYS” all over the country!

    WIN, WinMD, and WinRN, have also been able to help patient organizations, physicians, and nurses to provide encouragement, assistance in developing awareness and educational programs, patient support, advocacy for equal access to care and appropriate treatments, and travel to medical meetings worldwide.  This year we were ecstatic to sponsor 53 grant programs!

    One of the programs closest to my heart, Roots & Wings, was able to assist 11 babies and their families, with funding for travel and housing while receiving stem cell transplants.  I am filled with so much joy to help these families through this heart-wrenching time, arrange for their children to receive the proper treatment and the opportunity for a full and healthy life, and at the same time, ease the burden of financial worries.

    This year we also established a new community oriented campaign on our social channels.  We asked friends and family to help spread awareness, education, and advocacy by helping us “Burst the Bubble” About Primary Immunodeficiency. I love the creativity used to make the “bubbles” and look forward to receiving more photos in the future, especially during World PI Week as we host our “Balloons and Bubbles” launch worldwide!

    We have also had a very strong bond with our community.  Your voice has become stronger and I am so touched by the beautiful things you have shared with us.  You have allowed us into your lives and for this we are sincerely honored.

    Jeffrey’s request to “do something” continues to ignite a fire inside of me, and I am so thankful for all of you who have supported us and our mission to help better the lives of those affected by Primary Immunodeficiency.  We still have a long way to go, with so much more to “do”.

    Join us in our mission of hope, advocacy, and action, and together let’s make 2015 the best year ever!

  • Learning

    Learning.  It’s one of those things that happen whether or not we want to or even realize it.  It happens all around us, and never ends.

    Every day you can learn something new, whether it’s the name of a new animal, a new neighbor, or a new song.

    Then there’s the learning you wish you never learned at all, the name of a disease affecting a loved one.

    Sometimes, while it can lead to heartache it can also lead to fascinating information. Through my PI journey, I certainly have learned more than I could have ever imagined.

    Of all the things I have been able to achieve with Jeffrey’s Foundation, one of the proudest moments was when two dear friends, Dr. Etzioni and Dr. Ochs, asked me to contribute to their book, Primary Immunodeficiency Disorders: A Historic and Scientific Perspective.

    I am now going to be able to share all that I have learned with thousands of people; my experiences and Jeffrey’s story will be preserved so that others can benefit from what I’ve learned. It feels good to be able to help others who are at different points along their journey.

    I present to you, Chapter 7: Jeffrey Asked Us to “Do Something!” Our Journey, and urge you to never stop learning… or listening.

    **

    Primary Immunodeficiency Disorders: A Historic and Scientific Perspective

    Chapter 7: Jeffrey Asked Us to “Do Something!” Our Journey

  • Global PI Village "Spotlight" Series: PJ Maglione, MD, PhD

    Name: PJ Maglione, MD, PhDhttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF? I began working with the JMF at the start of Allergy/Immunology Fellowship at Mount Sinai in July 2011. The JMF has generously supported fellows-in-training at Mount Sinai for many years so that they receive top-notch training in clinical care and research in the field of primary immunodeficiencies. Now that I am at my early stages as an academic faculty member, the JMF has been absolutely pivotal in allowing me to have protected time to continue my research endeavors and apply for grants as an early career investigator.

    Profession and Location: Instructor, Division of Clinical Immunology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY

    What inspires you? People who are passionate about what they do, in work and play. It is so easy to get into a routine, get by with the minimum, and let life and opportunities pass you by. When I see those who are really trying to be the best at what do professionally, whatever it may be, and try to get the most out of life every day, it wakes me up out of that easy routine and reminds me to try to be one of those people myself.

    What aspect of JMF do you find most special? Speaking from experience, I can say that I think the JMF’s commitment to fellows-in-training is quite special. Not only has the JMF supported our fellowship training program at Mount Sinai for many years, but it has also made available research and travel grants to those who really need it. These grants are absolutely vital for fellows-in-training and early career faculty who have limited financial support to conduct research or attend conferences.

    What’s your favorite JMF memory? I actually had the opportunity to sit next to Rochelle Hirschhorn at dinner at a JMF event this past year. Not only did she discover ADA deficiency, a type of severe combined immunodeficiency, but she also predicted that it could be treated with gene therapy, which we now have increasing optimism may become a reality for many children with this form of primary immunodeficiency. She is a real giant in the field of immunology and truly an inspiration when you consider that this work was done during a time when women physician-scientists were not common or eagerly accepted. I cherish the conversation I had with that night Dr. Hisrchhorn very much.

    Favorite Quote: This might be silly because it is a quote from television, but one quote by Jean-Luc Picard (Captain of the Enterprise from Star Trek the Next Generation!), “Things are only impossible until they are not,” has always stuck with me. These words come into my head often when faced with difficult clinical or research scenarios that seem hopeless. We should believe that we will make new therapies and treatments for diseases that seem impossible to treat, because that’s all we have ever done. Similarly, when we think about research we have to remember to not be afraid to challenge scientific dogmas, because that is the only way we’ve ever moved forward. Jean Luc-Picard was an inspiring guy!

    To Sum Up! I’ve had a longstanding interest in immunology, ever since I was introduced to it in high school biology class. I was so enamored with the topic that I picked a college because it had an undergraduate immunology major and wrote a research paper on B cells in the first semester of my freshman year. I pursued an MD/PhD because I thought it would give me the best chance to learn all aspects of immunology, both basic science and clinical medicine, and met with my current clinical and research mentor, Charlotte Cunningham-Rundles, years before I started fellowship in clinical immunology. I have been pursuing a career in immunology for quite a long time. It is so exciting to have finally gotten this far.

  • Global PI Village "Spotlight" Series: Dr. Chaim Roifman

    Name:  Chaim M Roifmanhttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF? 1996

    Profession and Location: Director, Canadian Center for Primary Immunodeficiency | Director, Immunology Specialty Lab | Director, Fellowship Training Program in Immunology/Allergy | Senior Scientist, Research Institute | Professor of Paediatrics and Immunology, University of Toronto | The Hospital for Sick Children, 555 University Ave.  Rm7277Elm, Toronto, ON. M5G1X8

    What inspires you? Finding cures for PID (complexity of human body).

    What aspect of JMF do you find most special? A charity that single handedly transformed the field of Primary Immunodeficiency into a scientific and educational powerhouse for the benefit of individuals afflicted with immunodeficiency.

    What’s your favorite JMF memory? The inception of the JMF Network

    Favorite Expression: How can I help you?

    To Sum Up! First and foremost, I am a loving and devoted partner to my wife Perach; proud father to Idan, Rona and Maian; and a complete voluntary prisoner to my gorgeous grandchildren. I am a clinician-scientist-educator and advocate for PID. I created, or helped create 7 (inter)national organizations promoting PID research and awareness. I conduct research into the molecular basis of PID, and signal transduction in lymphocytes. I have improved outcome of bone marrow transplantation in severe combined immunodeficiency, defined dosing and new indications for IVIG, and developed novel anti-cancer agents. I am a recipient of numerous awards including the E Mead Johnson award, the Henry Friesen Award, and the Donald and Audrey Campbell Chair. I hold 142 patents, have authored over 300 peer-reviewed articles in high impact journals like Cell, Nature, New England Journal of Medicine and JAMA, and attained multiple grants from agencies such as NCI, CIHR, OCRN, NIH, and others. I am fortunate to be supported by scientists in my laboratory, close colleagues and friends, and very proud of the achievements of my students. I am also lucky to be presented with the rare opportunity of disseminating scientific information related to PID as editor in Chief of LymphoSign Journal.

  • Global PI Village "Spotlight" Series: Dr. Juan Aldave

    Name: Juan Carlos Aldavehttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF?  On December 2011 I evaluated a 2-month-old girl with severe mucocutaneous candidiasis. Her name was Sami Toro. At that time my career in PID was not yet initiated, so I did not know how to help the baby. Then, I contacted Vicki Modell by email. She suggested me to contact Dr. Antonio Condino, who referred me to Dr. Jacinta Bustamante, Dr. Anne Puel and Dr. Jean-Laurent Casanova (Paris, France). Some months later, they found a gain-of-funcion STAT1 mutation. This patient settled the initiation of our PID work and my PID career. JMF had an essential participation in this wonderful story.

    Profession and Location: Medical Doctor, Allergist and Clinical Immunologist, Hospital Nacional Edgardo Rebagiati Martins, Lima, Peru

    What inspires you?  The smile of our little patients.  The trust and hope of their parents.

    The support of JMF and every professor that has helped us for genetic and molecular studies (Dr. Luigi Notarangelo, Dr. Steven Holland, Dr. Troy Torgerson, Dr. Hans Ochs, Dr. Talal Chatila, Dr. Jordan Orange, Dr. Lisa Forbes, Dr. James Lupski, Dr. Anne Durandy, Dr. Jean-Laurent Casanova, Dr. Jacinta Bustamante, Dr.  Anne Puel, Dr. Bodo Grimbacher, Dr. Antonio Condino, Dr. Shigeaki Nonoyama, Dr. Bobby Gaspar, Dr. Amos Etzioni, Dr. Jean Donadieu, Dr. Fabian Hauck, Dr. Klaus Warnatz, Dr. Millo Seppanen, Dr. Kate Sullivan, Dr. Francisco Bonilla, Dr. James Verbski, and their wonderful teams).

    What aspect of JMF do you find most special?  Their love to PID patients.  Their wonderful organization.

    What’s your favorite JMF memory?  The first e-mail that Vicki sent me, with the precise counsel for us to help Sami Toro. This baby started my PID career.

    Favorite Expression:  Every day is a new journey to improve PID work in Peru.

    To Sum Up!  I am honored to be part of the JMF team. It is a privilege to receive such support. The improvement of PID children makes me feel happy and useful. I love teaching about Immunology in a simple and funny way. I love playing soccer. My family (parents, brother and sister) gives me a lot of support. I strongly believe in God’s love and power.

  • Global PI Village "Spotlight" Series: Jo Ann Fortunato

    Name: Jo Ann Fortunato

    When did you join JMF? June 15, 2002

    Role: Chief Financial Officer. I am responsible for the day to day financial coordination and reporting on the financial activities of the Foundation.

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    What inspires you? Passion, compassion and acts of kindness.  Our Roots and Wings Program brings all of that together. What can be more inspiring than helping to save the life of a child?

    What aspect of JMF do you find most special? The ability to see the realization of Fred and Vicki’s visions and dreams. As an example, when I first interviewed at JMF 13 years ago, I asked “what does the Foundation hope to be doing 5 years from now”.  The answer was Newborn Screening.  With much hard work and passion on their part, I have had the privilege of watching that dream come true.  Even more special is hearing the success stories of the children whose lives have been saved because of it.

    What’s your favorite JMF memory? I have so many over the years it would be hard to pick just one.  Meeting the families and the doctors who care for them at our New York City KIDs Days and spending time with them is special. Watching the kids having a great time and forgetting about PI for just a little while personalizes the work of The Foundation for me.

    Favorite Quote: “Start each day with a grateful heart”  ~ unknown

    To Sum Up! My favorite thing to do is to cook a good meal for my friends and family. I enjoy growing a herb garden each summer and incorporating the herbs into the dishes I cook.  I love to garden and look forward to watching the flowers emerge each spring, coloring the landscape.

  • Guest Blogger: Jason Shuman "Three Lessons the Modell’s Taught Me"

    Three Lessons the Modell’s Taught Me

    After being diagnosed with Primary Immune Deficiency at 6 months of age in 1991, my parents were uncertain about what the future had in store for me. However, after meeting Fred and Vicki, and getting involved with the Jeffrey Modell Foundation, my course in life became well defined.

    From Center Dedications openings at hospitals to Spring Ahead Galas, I’ve had the incredible opportunity of becoming close with the Modell’s over the past 15 years. Acting as another set of Grandparent’s to me, Fred and Vicki helped me learn a fair share of life lessons along the way.

    From a kid who was labeled “bubble boy”, to now a first time entrepreneur, I’ve decided to highlight 3 of the most important lessons that I learned from Vicki and Fred.


    Be Confident

    Whether it’s in business or with your health, you must be confident in the way you go about doing things. Napoleon Hill once said that, “the starting point of all achievement is desire,” and I believe that this pertains to PI patients in many ways.

    On a personal level, you should know that you can go out and live the life that you want. For example, over the past four years I’ve traveled to 4 continents, joined a fraternity, started a company and lived over 3,000 miles away from home.

    Professionally, you have no need to be nervous. I guarantee that you’ve most likely faced more adversity than anyone else out in the workforce. Therefore, employers will look at your PI as an asset vs a liability, based purely on the fact that you’ve already overcome great odds.


    Follow Your Dreams

    As a Millennial generation we tend to focus on enjoying what we do. Therefore, I strongly urge you to identify what your passion is in life and then go after it. Set goals and deadlines, find mentors, and most of all, don’t be afraid to put yourself out there.

    Nearly two years ago I realized that my passion in life was to inspire others to have the confidence to follow their dreams. This passion came from the incredible opportunities and mindset that Fred and Vicki bestowed upon me. As a result, I launched my first company, an eCommerce casual men’s footwear brand named Category Five, and I haven’t looked back.

    Confucius once said “Choose a job you love, and you will never have to work a day in your life.” Live by this quote.


    Help Others

    Pay it forward. It’s plain and simple. Vicki and Fred have touched the lives of so many patients and families that it’s impossible to count. As the younger generation, we have been lucky enough to reap the benefits, and it’s our job to make sure that their legacy lives on every day of our lives.

    The strength, courage and overall zest for life that Vicki and Fred have exemplified since Day 1, is something for us all to look up to.

    Finally, while they’ve always pushed me to be confident, follow my dreams and help others, the reality is that they’ve taught me so much more than that. However, what all these lessons have added up to is the fact that Vicki and Fred don’t just want children with PI to live “normal lives”, they want us to live extraordinary ones!

  • Dr. Shereen Reda

    For the last 27 years, JMF has advocated for Primary Immunodeficiency and accomplished so much to be proud of, mandatory NBS in several US states, discovering new genes, building centers around the globe, and so much more.

    One moment in which I was particularly proud of our community was this past World Primary Immunodeficiency Week.  The Jeffrey Modell Foundation held its annual photo contest, where JMF centers send in pictures of their Balloon Launch Tribute, with their own creative personalized touches.  The first place winner receives funds to create a “feel good” event for their current patients and their families.  In the past, people have used the funds to throw parties, or educational seminars. The first place winner also receives a grant award to commend their hard work and dedication to their patients.

    However, this year, winner Dr. Shereen Reda, from Ain Shams University in Cairo, Egypt, did something very special. She obtained IVIG for patients in which treatment was a financial hardship. She worked tirelessly to receive additional IVIG, including forgoing her personal prize, in order to further stretch the reach of her winnings and spreading her compassion.

    This gesture, completely selfless in nature, is the epitome of what JMF stands for, going above and beyond to help others in need.  It’s moments like these that truly inspire me, for not only are we helping patients and their families, but knowing we have an amazing network of passionate and caring doctors and nurses who share our dream of one day curing PI worldwide – and for that I couldn’t be prouder.

    +++

    Dr. Shereen Reda’s winning photo entries.

    http://downloads.info4pi.org/images/dr-shereen-reda-WPIW-photo-win-resize-480x360-53ecf78c4d7cb-original

  • Community

    Some people think of a community in its physical sense, that it is proximity that defines it. However, I like to believe that community is more about how close your heart is to something.

    There are many different kinds of communities with different beliefs and motives and focuses, and they are all special in their own way.  There’s a closeness that comes from being a part of a group who’s fighting for what you’re fighting for, who believes in what you believe. 

    I especially feel that way towards the JMF community. We are fortunate enough to have friends all over the world; in different time zones, continents and hemispheres. We may not be in the same location, but we all feel strongly about the same thing – the importance of educating and spreading awareness about Primary Immunodeficiency, to produce more meaningful treatments and fund important research to find more cures.

    The first part of the word community comes from communal, meaning sharing and for all.  The second part of the word, unity, is about standing tall together. I’m proud that Fred and I have been able to encourage supporters of Jeffrey’s Foundation to be undivided, steadfast and strong.

    There are people within our community who have been with us a long time and others who have just joined.  But the closeness is always there. It is this closeness that inspires me to believe that, together, our community can and will make a profound difference in so many precious lives and achieve our goal to cure PI worldwide.

  • Global PI Village "Spotlight" Series: Jessica Quinn

    Name: Jessica Quinn http://downloads.info4pi.org/images/Beakers-resize-248x229-533edc5534af4-original

    When did you join JMF? March 2014

    Role: Scientific Director – Oversight of all things “science” at the Foundation. This involves global collaboration to coordinate our 3 Research Programs, publications in scientific journals, JMF’s annual Physician Survey, our current poliovirus excretion prevalence study (for which we have partnered with the Bill and Melinda Gates Foundation, the Task Force for Global Health, the CDC, and Global Polio Lab Network), and any/all additional projects that may arise!

    What inspires you? Passion, genuine kindness, and resilience.

    What aspect of JMF do you find most special? The passion behind the Foundation and the breadth of its reach. JMF’s history of achievements is remarkable, as is its goals for the future. I find contentment in the fact that no matter the task at hand, it all comes back to a single, meaningful mission: improve and save lives. This makes me proud to come to work every day.

    What’s your favorite JMF memory? The WPIW celebration at JMF Headquarters in NYC in April of 2014. At that point, I’d been working here for only 1 month and was still learning the ins and outs of the Foundation. That day I was lucky enough to meet Jared, the last baby screened in a Newborn Screening pilot program in Puerto Rico who happened to have SCID. Because he was screened as a newborn, Jared was able to receive a bone marrow transplant, which saved his life. Jared was able to be with us that day, to run around and play, because of a simple test. This put things in perspective for me and solidified the already poignant mission of the Foundation in my heart and mind.

    Favorite Quote: “Never touch anything with half of your heart” and “If I look at the mass I will never act. If I look at the one, I will.”

    To Sum Up! I’m a daughter/sister/aunt/friend/woman with a passion for science, public health, and helping others however I’m able. I love to workout, travel, read, and cuddle with my dog, Putty!

  • “Doing Something” in Oslo, Norway

    I have long been driven and motivated by my son Jeffrey’s, request to “Do Something!” and JMF was created with the intention to do so.

    Part of our effort to help cure Primary Immunodeficiency has been the founding of Jeffrey Modell Research and Diagnostic Centers, which along with major academic teaching hospitals, provide a place where patients can go for expert care. With well over 200 different locations, JMF has created a one of a kind community that reaches people in all corners of the world.

    Most recently, we have been fortunate to spread our mission and continue to “do something” for others affected by Primary Immunodeficiency in Oslo, Norway.  On Wednesday, June 18, JMF opened the JMF Research and Diagnostic Center at Oslo University Hospital.  Led by our good friend, and excellent immunologist, Dr. Tore Abrahamsen, the newest addition to our JMF Network will provide a setting for excellent care, precise diagnosis, state of the art research and access to treatment options for patients affected by Primary Immunodeficiency.

    Over the last twenty seven years, we have advanced the way people with Primary Immunodeficiency are diagnosed and treated, and I know Jeffrey would be proud of all the something’s we do.

  • Our Trip to Sweden

    Last month, Fred and I travelled to Stockholm, Sweden.

    We were there to attend Frontiers in Immunology 2014, at the Nobel Forum, an invitation only meeting for the world leading physicians and scientists in Immunology. Those in attendance were Immunologists performing cutting-edge research, in all areas of Immunology, including cancer, diabetes, autoimmune diseases and Primary Immunodeficiency.

    This three day event brought the brightest and most passionate minds in the field of Immunology together for powerful presentations, meaningful conversations and extraordinary educational panels. Nobel Laureate, Dr. David Baltimore, who won the prize for his discoveries concerning the interaction between tumor viruses and the genetic material of the cell, delivered an inspiring Keynote Address.

    Since 1901, the Nobel Prize has been regarded as one of the most prestigious awards in the world. The Immunology community has been blessed with 34 individual winners, an impressive feat to say the least!

    Our trip to Sweden contributed to our mission of raising awareness and spreading education about these disorders; in order to one day reach our goal of curing Primary Immunodeficiencies.

    http://downloads.info4pi.org/images/Nobel-Laureates-in-Immunology-resize-899x474-53d01943c0ab9-original

  • my inspiration, my words

    I would like to warmly and personally welcome you to the Jeffrey Modell Foundation’s Global PI Village blog, “my inspiration, my words.” For some time now, we have been thinking about recreating our website. We understand the importance of the data and medical information, but it is about much more than the statistics. It’s about growing a community and bringing people together across states, nations, and even the globe. It’s a home in which our community can gather; a warm, supportive place. It’s a platform for patients and their families to unite and seek answers from both the Foundation and each other; answers that for so many have taken far too long to find; answers to questions that can provide clarity and hope. We are a second family that is here for you when the going gets tough and the road takes an unexpected turn.

    Today I am here to share my story with you, my inspiration, my words, with hope that each and every one of you will feel that you can do the same. Today is special, not only because it is the launch of a new website, but because it is the bonding of a community that no ocean or border can separate. My belief is that in order to create this bond, it is to tell you all who I am and how I got to where I am today.

    My husband, Fred and I created the Jeffrey Modell Foundation. It was not founded in memory of our son’s death, but rather in celebration of his remarkable life, and to save lives… the lives of babies born today, those yet to be born, and in memory of those for whom science and medicine had not caught up. We accept the reality that science and discovery did not come in time to save Jeffrey, but we are dedicated and committed to saving others. Jeffrey never knew how he would change not only our lives, but also the lives of many thousands of children that he would never meet.

    And our journey began in 1987, building our Foundation from the ground up. Since then, we have circled the globe from Shanghai to Sao Paulo, from Minnesota to Morocco, from Tennessee to Tunisia, from Argentina to Australia, from New York to the Netherlands and all that’s in between. The work of the Foundation has taken us to major academic teaching hospitals throughout the United States, Canada, Europe, Eastern Europe, the Middle East, Latin America, Asia, and Africa.

    Twenty-seven years later, we now have 556 Expert Physicians in our Jeffrey Modell Centers Network, working at 234 academic teaching hospitals, serving 196 cities in more than 78 countries, and spanning 6 continents. There are now more than 125 Jeffrey Modell Diagnostic and Research Centers throughout the world.

    No matter which country we are in, there is one constant that all of these places have in common: so many children and adults suffering with chronic and recurring infections go undiagnosed. These disorders keep them from enjoying a full life. Their illnesses interrupt their activities, detour their plans, and shatter their dreams. We have met so many of these patients as we travel throughout the world. The stories are similar, the disappointments are the same, and it’s time for a change.

    Our mission is to reach out to these patients through comprehensive programs of physician education and public awareness to ultimately give each and every child a chance to shine, to learn, and to provide them with hope for normal and healthy lives, and bright futures.

    Hope is possible because of the brilliance and compassion of the physicians, the resolve and dedication of the researchers, the perseverance of the quiet, the unsung heroes working days and nights in their labs, the bravery and courage of the families, the vision and constant support of our donors, and most of all, the patients who inspire us, propel us, and compel us to continue on our incredible journey.

    Now, in 2014, we are more dedicated to our mission than ever. Our motivation to find cures grows with each and every passing day. We are devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures—through clinical and basic research, physician education, patient support, advocacy, public awareness, and newborn screening.

    So, with all of that said, I am so thrilled that we can launch such a unique platform for self-expression, helpful discussions, and to connect families and patients with PI from around the world. We will provide answers, we will provide assistance to guide people in the right direction, and we will provide compassion, support, and hope! The Jeffrey Modell Foundation stands for Hope, Advocacy & Action! And today, with the launch of our Global PI Village, we will continue to provide hope, we will continue to advocate for our community, and we will always take action to provide a better place for our patients with Primary Immunodeficiency.

    I look forward to getting to know each and every one of you. Welcome to our neighborhood!

    With hope for our cause,
    Vicki

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