Seven years ago, our son Nate was diagnosed with 22q11.2 Deletion Syndrome at the age of 3 1/2 years. This diagnosis hit us like a ton of bricks and like every other parent in the digital age, we frantically searched the internet. Lucky for us, we found the 22q Family Foundation (then known as The Dempster Family Foundation).
Over the years, the 22q Family Foundations has supported us, and more importantly, Nate. They have:
- provided education: for us, our son’s educators and medical providers via fact sheets, seminars, webinars and references.
- promoted awareness: which has empowered us to do the same in our own community.
- advocated for appropriate educational services for Nate via the free Education Station.
- fostered a community: There’s such comfort in finding others who have shared experiences, learning from those that came before us and supporting those that are new to the diagnosis.
- created hope for the future through scholarships for higher education and career coaching services.
Knowing that this organization is not-for-profit and run entirely by volunteers, fundraising for the 22q Family Foundation became a priority for our family. The #werun22q Ragnar race is one of the foundation’s biggest fundraisers and is a powerful way to spread awareness. Every year they raise funds to keep these programs running and provide the education, awareness, advocacy, support and community that have been so valuable to us and to make sure that these services are still there for the next group of frantic overwhelmed parents that are sitting down at their computer.