Botschafter

Präsident des Botschafterrats des BCMFF

Trudi Dawson lebt in East Sussex in Großbritannien und hat drei Kinder, von denen nur eines an BCM leidet.
Vor ihrem Umzug aus London arbeitete Trudi 15 Jahre lang in der Werbung und Marketingkommunikation.

Im Jahr 2006 wurde Trudi außerdem Geburts- und Wochenbettdoula und unterstützt Familien vor, während und nach der Geburt. Mittlerweile ist sie auch Schwangerschaftslehrerin, Spezialistin für Säuglingsernährung, Schlafcoach sowie Schwangerschafts- und Postnatal-Yogalehrerin.

Sie ist eine aktive Sportlerin und begeisterte Reiterin. Trudi hat eine besondere Leidenschaft dafür, die globale BCM-Familie zusammenzubringen, um sich gegenseitig zu unterstützen und jedem Familienmitglied zu helfen, sein Potenzial auszuschöpfen.

Mark ist im Ruhestand und lebt in Atlanta, Georgia. Er und sein Enkel haben BCM, sowie mehrere seiner Onkel und Cousins. BCM hat einen großen Einfluss auf seine Familie gehabt, so dass eine Heilung ein lebensveränderndes Ereignis für viele in seiner Familie sein würde. Mark und seine Frau Diane wollen vor allem bei der Suche nach einer Behandlung oder Heilung für ihren 4-jährigen Enkel Zachary behilflich sein.

Mark schloss sein Studium an der University of Georgia 1979 mit dem Schwerpunkt Rechnungswesen ab und wurde zum C.P.A. (Wirtschaftsprüfer) ernannt. Nach 10 Jahren in der Wirtschaftsprüfung bei Deloitte, Haskins, & Sells arbeitete Mark in leitenden Finanzpositionen als Controller, Leiter der Finanzabteilung und Finanzvorstand für fünf große Aktiengesellschaften. Nach 10 Jahren als Finanzleiter von Equifax ging Mark 2016 in den Ruhestand.

Marks oberstes Ziel ist es, das Bewusstsein und die Finanzierung für eine Heilung oder Behandlung mit BCM zu fördern, so dass das Leben und die Zukunft von jungen Männern und Jungen mit BCM wird sich deutlich zum Besseren verändern.

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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.

Marylees Sohn, Vater und zwei weitere Verwandte haben BCM. Wie bei den meisten betroffenen Familien
wurde die richtige Diagnose erst 2017 gestellt, als ihr Sohn durch Gentests diagnostiziert wurde.

Marylee ist Absolventin des UNC-Chapel Hill und des Jefferson Medical College und absolvierte eine
Facharztausbildung am Baylor College of Medicine.
Marylee ist Internistin und Kinderärztin mit Doppelfachausbildung und besitzt eine direkte Hausarztpraxis in New York City, wo sie mit ihrem Mann und ihrem Sohn lebt.

Sie ist bestrebt, das Bewusstsein für BCM bei Medizinern zu schärfen und eine sichere und effektive
Gentherapie für BCM zu fördern. Ihr Ziel ist es, das Bewusstsein zu schärfen und Mittel bereitzustellen, um eine Gentherapie für BCM zu finden.

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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.