Ambassadeurs

Président du Conseil des Ambassadeurs du BCMFF

Trudi Dawson vit dans l’East Sussex au Royaume-Uni et a 3 enfants, dont un est BCM.
Avant de quitter Londres, Trudi a travaillé dans le secteur de la publicité et les communications marketing pendant 15 ans.

En 2006, Trudi est également devenue Doula Naissance et Postnatale, accompagnant les familles avant, pendant et après l’accouchement. Elle est maintenant également enseignante prénatale, spécialiste de l’alimentation du nourrisson, coach du sommeil et enseignante de yoga pendant la grossesse et postnatale.

Elle est une sportive active ainsi qu’une passionnée d’équitation. Trudi a une passion particulière pour rassembler la famille mondiale BCM pour se soutenir mutuellement et aider chaque membre de la famille à atteindre son potentiel.

Mark est retraité et il vit à Atlanta, en Géorgie. Lui et son petit-fils sont tous les deux porteur de l’anomalie BCM, ainsi que plusieurs de ses oncles et cousins. L’arrivée d’un traitement de la maladie du BCM aurait un impact majeur sur sa famille, un événement qui changerait littéralement leurs vie. Mark et son épouse Diane sont investis dans la recherche d’un soin, ou un traitement curatif pour leur petit-fils de 4 ans, Zachary.

Diplômé de l’Université de Géorgie en 1979 avec un Master en comptabilité, il est devenu titulaire d’un Doctorat en droit (Certified Public Accountant).
Après 10 ans en comptabilité publique chez “Deloitte, Haskins, & Sells”, Mark a occupé des postes de direction dans les finances en tant que contrôleur, trésorier ou directeur financier pour cinq grandes sociétés.

Après 10 ans au poste de trésorier “d’Equifax”, Mark a pris sa retraite en 2016.
L’objectif principal de Marks est de sensibiliser et de financer les soins ou le traitement au BCM afin que la vie et l’avenir des jeunes garçons atteints de BCM soit considérablement amélioré.

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I grew up in a family where multiple family members were impacted with BCM. An older brother, several uncles, many cousins, and unknown numbers of carriers, but not all understanding what the eye problem we all had was all about.
I was fortunate to have a mother and very accommodating school principal and teachers that worked with my brother and myself to assure we received as much assistance as was really available in the 60’s. I graduated from high school and went on to earn a BS in Business Administration. I held several retail store management positions in the years following and my wife and I moved several times in our first years of marriage before settling down with our 2 children in Erie, Pa.
I took a position in computer sales at a retail computer store in the early 80’s which shortly afterward became an outside sales position as the market demands changed. As an outside sales rep I depended on public transportation for all my client appointments and became efficient at maneuvering my way through and around our city on local busses. Learning schedules, transfers, and time estimates was essential to being successful in keeping up with the demands of this position along with the rapidly changing technology landscape through this period.
As the market changed through the 90’s, I started a technology consulting firm along with a business partner. We developed clients in the region and grew the business over the next 20 years to include offices in 3 cities, 30 employees, and gross sales far exceeding our expectations. A few years ago I sold my share in the business and retired.
I enjoy many hobbies and outdoor activities including cross country skiing, golf, cycling, kayaking, and hiking. I serve on the Board of Directors for The Sight Center of Northwestern Pennsylvania where I serve to help others deal with vision loss and blindness. My daughter and grand daughter are both BCM carriers so my interest in ongoing research and development extends to the generations to come.

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Nicole is a stay at home mom, who has worked for several multinationals in management positions, traveling and living across 3 continents. Born in Seoul, Korea, she immigrated to the USA when she was 6, where she grew up a Virginian and got a degree at Cornell University. After a few years working in NYC, she moved to Asia for work and didn’t return till July 2020, with an Italian husband and 2 children. She is now a proud Californian.

Although she doesn’t have direct family members with BCM, she has very close friends with BCM and witnessed the challenges put forth by this disease. As a perennial expat, friends are as close as family. Initially assisting with some occasional translation work for her friend Renata, it eventually blossomed to a very real interest and commitment to finding a cure.

Nicole’s goal is to create awareness of BCM first among the ophthalmic and retina specialist communities in California, and then to create a BCM community here in CA where those with the condition and their families can find support.

Le fils de Marylee, son père et ses deux cousins ​​sont atteints de BCM. Comme la plupart des
familles touchées, le véritable diagnostic n’a été posé qu’en 2017, lorsque son fils a eu accès a des tests de génétique moléculaire.

Marylee est une ancienne étudiante de l’UNC-Chapel Hill et du Jefferson Medical College, elle a fait son internat au Baylor College of Medicine. Après quatre années dans la pratique privée en tant que pédiatre, elle travaille maintenant dans une société de capital-investissement à New York.

Son objectif est de sensibiliser et de collecter des fonds afin de trouver un traitement curatif du
BCM par thérapie génique.

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Angela has 2 sons, only her youngest, Elijah, has BCM.
As for her extended family, her nephew DC, 2 cousins, 2 uncles and 2 great-uncles have BCM.

Angela was born and raised in Eastern, KY. She moved to Louisville to peruse her first bachelors degree, then moved to Northern KY for her second bachelors degree and Masters degree.

Angela lives in Spartanburg, SC and works at Cincinnati Children’s Hospital Medical Center in Cincinnati, OH as a CRNA (Certified Registered Nurse Anesthetist).
Angela’s goals are to be supportive of the greater Cincinnati BCM families, reach out to possible Upstate South Carolina BCM families, raise funds for the BCMFF Registry and ultimately the cure for BCM.

Caspar Wohlfahrt lives with his wife Victoria who is a medical doctor in Oslo Norway.

They have 2 boys, Oscar 21 and Edvard 19 with BCM and Caroline 13 years old. Oscar, born in Norway was diagnosed in 2001 at University of Minnesota, Departement of Opthalmology since the family lived in Minnesota for 3 years between 2001 and 2004. Edvard was born in Minnesosota in 2003 and also he was diagnosed at University of Minnesota.

Both Oscar and Edvard have been active race rowers at national and international level. Caspar is eager to contribute to the BCM foundation as an ambassador for Norway and Scandinavia.

Julius lives in Stuttgart, Germany and is 27 years old. He is affected by BCM and is currently the only case in his immediate family. His grandfather had BCM and his mother is a carrier.

Julius is a railroad engineer (Dipl.-Ing.) at Deutsche Bahn and works on major infrastructure projects. He studied at the Technical University of Dresden.

He was diagnosed with BCM in 1998 at the age of two. At the nearest eye clinic in Tübingen, where BCM was being researched at the time, Julius’ family was the 12th family to be registered with the disease. While virtually no research was being carried out in the field of rare retinal diseases in Germany, the BCM Families Foundation was founded in Delaware, USA. This finally created an internationally operating platform with the aim of curing BCM. Julius has been an ambassador for the BCM Families Foundation in German-speaking countries since 2023.

Julius’ vision is to raise social awareness of the disease, to encourage affected people to pursue their professional and private goals despite illness and disability and to promote a cure for BCM. The aim is that future generations can be cured of BCM as early as childhood and perhaps it will also be possible to cure young people and adults at some point.