Youth and Young Adult Community Highlights

Check out these story highlights of local teen and young adult initiatives. 

Classic Car Show Fundraiser 

My name is Christina P., and I am a high school senior from a small town in Ohio called Tiffin. For my senior year service project and because of my love of antique  cars, I chose to host a fundraiser classic car show for a charity of my choice. When looking for a suitable charity, I came across the Global Genes website. I soon discovered that Global Genes was a terrific fit for me because I plan on pursuing a career in the field of genetic research. I loved everything this organization stood for, and although I am not directly affected by rare disease, I am extremely passionate about this subject. Throughout the summer, I spread the word about my car show and collected giveaways and raffles that could be used to benefit the organization. On September 30th, over 80 beautiful classic cars attended my show, and many more spectators came out to support. The event was a huge success, and I received more support than I ever expected. I am so glad that I was able to raise money for a great organization and raise awareness for the rare disease community.

Charity for Charities

Each year the senior students at Norwalk High School participate in Charity for Charities as part of their senior government class. Students in each government class present on a local non-profit in which the class votes for a charity to represent them. This year, Delilah O chose Global Genes who represented her class and they raised $1,000.00 to donate by selling granola bars in their community. Delilah chose Global Genes because her 11 year old cousin was diagnosed with the rare disease Nager Syndrome.   

This amazing program was developed by Dean Gray, a teacher at Norwalk High School, who hopes to inspire other schools to start programs like this and contribute back to their community.

 

Rare Disease Awareness Club

The Rare Disease Awareness club at Belmont High School is a nonprofit organization aimed at fundraising, raising awareness, and providing support for patients with rare diseases. Sofia L, the founder of the club, decided to create this club after recently learning that my dad has a rare eye disease. Sofia says that she remembers the fear that her family felt when he had surgery, but her parents did not give her and her sister many details because they were so young. She started researching different rare diseases to find out more, and what she learned shocked her. Many patients were misdiagnosed, lacked support groups, and so many had few options for treatment; what’s even worse is that, together, these “rare” diseases are not so rare. Approximately 1 in 10 Americans is affected by a rare disease. With this club, she aims to change the lives of those affected in the most positive way she can.

To share your initiative contact Ashley Yee, Senior Manager at ashleyy@globalgenes.org.