Ambassadors

Trudi Dawson lives in East Sussex in United Kingdom and has 3 children, only one of whom has BCM.
Before moving from London Trudi worked in Advertising and Marketing Communications for 15 years.

In 2006, Trudi also became a Birth and Post­natal Doula, supporting families before, during and after childbirth. She is now also an Antenatal Teacher, Infant Feeding Specialist, Sleep Coach and Pregnancy and Postnatal Yoga Teacher.

She is an active sportswoman as well as being a keen horse-­rider. Trudi has a particular passion for bringing the global BCM family together to support each other and help each family member reach his potential.

Mark is retired and lives in Atlanta, Georgia. He and his grandson have BCM, as well as several of his uncles and cousins. BCM has had a major impact on his family so a cure would be a life-changing event for many in his family. Mark and his wife Diane especially want to be helpful in finding a treatment or cure for their 4-year-old grandson Zachary.

Mark graduated from the University of Georgia in 1979 with a major in Accounting and became a C.P.A. (Certified Public Accountant). After 10 years in public accounting with Deloitte, Haskins, & Sells, Mark worked in senior finance positions as Controller, Treasurer, or Chief Financial Officer for five large public companies. After 10 years as Treasurer of Equifax, Mark retired in 2016.

Mark’s primary goal is to raise awareness and funding for a BCM cure or treatment so that the lives and futures of young men and boys with BCM will be significantly changed for the better.

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.

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.