Board of Directors

Jerry Van Wyk

President

Jerry lives near Dallas, Texas with his wife Anne and their 4 children.  When their first son passed away in 2001, the physicians suspected he had GACI. At the time little was known about GACI, and their doctors were not aware of any treatments. In 2010, their second infant son with GACI received bisphosphonate treatment and unfortunately also passed away. Their daughter born in 2013, was treated prenatally for GACI with an unproven bisphosphonate therapy which had positive results in their now almost 6 year old.

Jerry is appreciative of the advancements of GACI research throughout the years. The small community of medical doctors, researchers, and families affected by GACI have made great strides to understand this disorder and share a message of hope. Jerry is grateful to be a founding board member of GACI Global and is a passionate advocate for families affected by GACI.

Christine O’Brien

Secretary

Christine lives outside of Boston, Massachusetts with her husband Michael and their 3 children. Her oldest two children both have GACI, with her son also having a second rare genetic disease called Loeys-Dietz Syndrome.  When her children were first diagnosed, she found herself in a dark and scary time with very limited information available. This inspired her to seek out other families struggling with a GACI diagnosis. She is excited to help make GACI Global the kind of resource that she would have wanted available to her when her children were first diagnosed. In addition to being a founding member of GACI Global and busy mother of 3, Christine also works as a photographer and swim instructor.

Anne Van Wyk

Treasurer

Anne lives near Dallas, Texas with her husband, Jerry and their 4 children. The GACI journey for their family has been filled with deep heartache and great joy. In 2001 and 2010, their infant sons sadly passed away from Generalized Arterial Calcification of Infancy (GACI).

When Anne was pregnant in 2013, an amniocentesis indicated their unborn baby had GACI as well. At 30 weeks into the pregnancy, Anne received bisphosphonate treatment for their unborn baby. The medicine miraculously stopped the calcifications from progressing into their unborn baby’s vital organs. At 39 weeks, their daughter was born and she continued to receive treatment for GACI until she was 1 year old. Their daughter is soon to be 6 years old and continues to be in good health. She is an outgoing and spunky girl who loves life.

Since their daughter was born, more babies affected by GACI have been born worldwide who have received the same prenatal bisphosphonate treatment and are thriving. During the past few years, Anne has been able to connect with families affected by GACI to encourage them and give them a glimmer of hope in their darkest moments. Anne is honored to be a founding board member of GACI Global and is thankful for the opportunity to reach more families affected by GACI.

Liz Molloy

Director

Liz lives in Dublin, Ireland with her husband and family.  When her third child was born, he was quickly diagnosed with GACI but died at 4months of age despite treatment.  Three years later her newborn baby girl was diagnosed with the same genetic mutation of GACI, and the family was told to expect the same outcome.  Thankfully, this was not the case and Liz’s daughter survived GACI.  Formerly a Sales & Marketing Manager in the Irish national telecommunications company, Liz is a founding member of GACI Global, and she is delighted to be working with her fellow directors to advocate on behalf of families worldwide affected by GACI/ARHR2.

Vicki Dedeigbo

Director

Vicki is the mother of 7 children and lives in Australia.  Vicki’s journey with GACI began in March 2002, back when it was known as IIAC.  Her daughter struggled immediately after birth.  She was diagnosed at 5 days old and sadly passed at 8 days from complete organ failure due to GACI.

In 2005, Vicki gave birth to her second daughter who suffered a heart attack at birth, receiving the same diagnosis as her older sister when she was 4 days old.  The medical team predicted the newborn would suffer the same outcome as her sister, however she defied the odds and responded to treatment with complete resolution of calcification noted by 3 months of age.  She is now 13.5 years old and has been clinically stable for many years now.  She is very academic and has very few limitations.  She doesn’t let anything hold her back!

Vicki is excited to be a founding member of GACI Global.  She is always happy to answer questions and share information with newly diagnosed families.