Justin Ungerleider was 2 years old when his older brother, Evan, died of Tay-Sachs. Now 15 years old, Justin is carrying on his brother's and grandfather's legacies - to fight this awful disease. He travels to schools, synagogues and community center to speak about the Jacob Sheep ‘Adopt-a-Sheep’ program. (The Adopt-A-Sheep program raises funds to maintain this rare breed of sheep.)
These sheep play a critical role in the Tay-Sachs
Gene Therapy Consortium’s work to find a cure for Tay-Sachs. On a recent Sunday, Justin and his family drove to Boston to speak to 70 sixth and seventh graders at a local school about ‘Adopt-a-Sheep.’ He hopes he sparked an interest with them in taking on the projects as part of their bar or bat mitzvah education. To learn more about Jacob Sheep - visit here.
Allie Colaco was 2½ years old, when her twin brother, Keith, lost his battle with Tay-Sachs. Now 21 years old, she's pursuing her goal to develop treatments for Tay-Sachs and Sandhoff diseases. With a degree in Biology from the University of Notre Dame, Ally volunteers on a research project started by NTSAD Scientific Advisory Committee members, Fran Platt, PhD (University of Oxford, UK) and Cynthia Tifft, MD, PhD (NIH). Validating a possible biomarker for the upcoming gene therapy clinical trial will provide an important tool to support patient monitoring. Allie is a past recipient of the NTSAD Gottlieb Sibling Scholarship and an Annual Family Conference volunteer.
Cynthia read a New York Times piece written by an NTSAD mother not too long ago. Compelled to do something to help, Cynthia and her family opened their home to friends and their community to engage in a tribute to Emily, Rick and their son Ronan by raising awareness and needed funds for research for Tay-Sachs and related genetic diseases.
The event was an opportunity to highlight our collaboration with the Jewish Genetic Disease Consortium (JGDC) and NTSAD’s New York Chapter. Marion Yanovsky, Shari Ungerleider, and Tim Lord (board members and leaders in the NTSAD-NY chapter) shared their history and experiences with a warm welcoming crowd, including young families who have been spared the difficult times that will face Ronan's parents.
The hostess offered this heartfelt wish in the invitation:
"Emily writes that when she first learned of Ronan's diagnosis she promised that she would never avert her eyes from her son- that she would stay present throughout. My wish is that we not avert our eyes from this family and this disease, and do our part so that Emily and her husband can feel our support and care."
May the wishes of Cynthia and her family form part of all of our wishes and prayers in
this holiday season.
