We are a young (less than 1 year old) strictly volunteer 501c3. We would appreciate someone helping us develop a strategic plan focused on increasing our donor base and expanding our scope outside of just the "friends and family" circle.
Travis was my 4-year old son who died suddenly and unexpectedly from the rare and undiagnosed genetic birth defect Isolated Congenital Asplenia. He was born without a spleen, which left him with a compromised immune system. No one detected this condition until the autopsy. I founded TEAM 4 Travis in March 2019 (just 7 months after Travis's death) with the ultimate goal of preventing any other parent from experiencing the traumatic death of their child due to this rare disease. Thus far, we have enjoyed some success in making connections within the rare disease community, receiving a small capacity building grant and building rapport with researchers and scientists. We need help to craft a plan to ensure both sustainability and financial success. Our platform is unique in that we're trying to raise funds for an ultrarare disease, so we want to be specific and determined about developing an asplenia research network. There currently are no other organizations dedicated solely to research on asplenia, although there is interest from a group of immunologists, pediatricians, and geneticists.
We have developed a website that people say is visually appealing and tells our story. We have a 6 member Board of Directors and are working to expand that Board to at least 9 by year-end. We have some limited resources to devote to capacity building, but would like guidance in ensuring we're spending those dollars wisely and to achieve maximum impact. We are working to expand our community connections and develop relationships with local medical personnel.