Guest Author - Jackie O´Neal
Jacob’s Cure
Jordana Holovach, founder of Jacob’s Cure, a non-profit organization dedicated to finding a cure for Canavan Disease ( a rare, degenerative and fatal genetic brain disease.),embodies the type of person who when faced with a crisis asks: “Why not me?” rather than the self-defeating: “Why me.?"
When her son, Jacob now ten years old, was born in 1996, Holovach was advised by doctors that he would never hold up his head, sit, crawl, or be able to speak as a result of the disorder which affects the white matter of the brain. Rather than allowing herself to be stymied by the diagnosis of the rare disease, Holovach launched into a crusade to raise awareness about Canavan Disease and sought much needed funding. As a consequence of the rarity of the disease, governmental funding is scarce, however within a month of Jacob’s diagnosis, Holovach identified two researchers from Yale and the Auckland School of Medicine in New Zealand who had already succesfully treated children with a gene-therapy procedure.
In June of 1998, when Jacob was just two years old, he received the gene-therapy procedure and gradually began to improve.
When Holovach is asked what accounts for why she is optimistic and motivated, she does not hesitate to respond. “My son, Jacob. He’s just a living angel. He’s defied all the odds. I feel blessed to be his mother,” she said.
In 1998, when Jacob was first treated with gene-therapy, the procedure was fairly new, but now Holovach remains optimistic about an eventual cure. “The science is promising. Jacob has just turned ten. We have a research lab now and I speak with scientists every day. I believe there is a cure,” she noted.
Currently, Jacob is in the second grade and attends school with a nurse. He learns and completes his school assignments on a lap top. In addition, he is further aided by a technology known as Dynavox which helps him to respond academically to teacher’s questions. All lessons and materials are adapted for his use and forwarded to his laptop through special software. “His teachers attest to how smart he is,” Holovach noted in a phone interview from her home in Harrison, New York.
Holovach offers sound advice to parents who may have considered starting a foundation to help an afflicted family member. “First, don’t take what the doctors say to heart- there are doctors out there willing to work on the disease,” she said. When Holovach initiated Jacob’s Cure, she made many grassroots efforts and highly recommends the same strategy to others. “Go to your community first- your immediate network of people and also get referrals. That is how we raised our first $60,000,” she said.
In addition, In 2001, Holovach delivered congressional testimony which positively impacted her campaign. “You have to be willing to go to Washington. It’s crucial, “ she said.
Since 2000, when Jacob’s Cure was founded, Holovach has raised over one million dollars for research.
For more information on Jacob’s Cure and upcoming fundraising events: Visit: http;//www.jacobscure.org
