I'm sure many of you saw posts yesterday for "Show Your Stripes" honoring Rare Disease Day. But what is Rare Disease Day and why do we recognize it?
Rare Disease Day was started in 2008 to bring awareness to rare diseases. A disease or condition is considered "rare" when it affects fewer than 1:2,000 individuals. And while there are over 6000 rare diseases, they share one very particular commonality - there is very little research and often few treatment options as a result.
The Rare Disease Day long-term objectives are to "achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease." Learn more about Rare Disease Day at https://www.rarediseaseday.org/
Many of our Southside families are battling rare diseases, and they know they can turn to each other for information and support. In fact, that's why Southside Support was founded. A group of moms, with no where else to turn, turned to each other. They found their collective knowledge helped them problem solve together, find providers in the area and connect them to other moms just like them, and families just like theirs. While many of our families are facing different rare diagnoses, they find support with other parents who are also navigating uncharted territory with their own child(ren). They ask questions of those who have "been there" and there is another level of knowledge to be found with fellow parents who can understand medical terminology, but who may or may not be medical professionals themselves. Even though they may be different diagnoses, treatment plans might be similar. For example, parents who have navigated tube feeding, or tracheostomies, regardless of the diagnosis requiring these medical interventions, can relate, as stoma care is relatively the same. Families in different stages of their journey with rare diseases can get support from those with more experience and provide support to those just starting their journey at the same time. It is a never-ending cycle of discovering new information and resources and sharing our discoveries with one another.
Southside Support has now grown to nearly 4,000 members in South Metro Atlanta. That is incredible! You are NOT alone. We are truly in this together. It has been amazing to watch the connections made and know that we were able to facilitate those relationships through our support group. My own family has received incredible support and access to resources as a direct result of contacts we've made here at Southside Support. We love being a part of this community.
As a registered 501(c)(3) charity, Southside Support is more than just a support group. We provide access to community events through our SNAZ program. The SNAZ bus (Special Needs Accommodation Zone) is a 40' RV that was retrofitted, through generous donations by individuals and Habitat for Humanity Coweta County, to be a safe space for individuals with disabilities and their families. SNAZ contains a sensory zone, adult changing station, refrigeration for tube feeding supplies, a quiet space, privacy for breastfeeding moms and is wheelchair accessible. SNAZ attends community events so families of children with special needs can also attend and participate, knowing they have the additional support if needed.
Next month, on April 2nd, we are hosting a SNAZiversary Golf Tournament for World Autism Awareness Day. This charity golf tournament is raising funds for repairs and maintenance to our SNAZ bus and to expand that program to ensure more community events are accessible via SNAZ. To register your team, or sponsor our event, visit https://events.golfstatus.com/event/0abea9d1-6010-4b23-bc2c-921485f3d01d/sponsor/available-sponsorships
We hope to build a more inclusive and accessible community for everyone. Thank you for partnering with us and showing your commitment to our special needs families.