About
Raising A Rare, what does it even mean?
It means that we fought HARD for 7 years to get a diagnosis for Isaac. We pushed for answers. We finally found the answer that confirmed what we always thought, Isaac was rare, so very special.
It means that every single day is an adventure. There's no books to help me understand how to best help Isaac because he is only 1 in approximately 500!
It means that even though he has a diagnosis, we still need to fight everyday. We need to fight for therapy services. We need to fight for research. We need to fight for answers.
Our journey began in 2019 when Isaac was diagnosed with Lamb-Shaffer Syndrome. From there, Raising A Rare has grown into what it is today, a registered 501(c)(3) non-profit, supporting the special needs community in any way we can!
Mission
Our mission is to raise awareness about Lamb-Shaffer Syndrome, the importance of proper diagnosing and raise funds to pay for the medical research being done at the Children's Hospital of Philadelphia on the SOX5 gene. Additionally, we support the special needs community, as a whole, through community events and involvement.
Vision
Despite being a small organization now, we have BIG dreams! While our primary focus is medical research, we feel the calling to do so much more! One goal is to have grants available to families who need help with therapies and medical devices. Additionally, we will focus on proper diagnosing of genetic disorders in order to improve on insurance coverages.
