In July 2015, we all lost Alison Aldredge, a dear friend, a fierce mama, a beloved teacher, to a syndrome she'd battled her whole life, called Vascular Ehlers-Danlos (vEDS.) Here's a message from her daughter, Margaret,
"During our mother’s memorial service in August, my family and I made a pledge to seek a cure for vEDS. Over the past several months, we have connected with researchers and clinicians from the Hospital of Special Surgery in New York City, Johns Hopkins in Baltimore, and the University of Washington in Seattle. Each group is working towards a cure or ameliorative treatment for Ehlers-Danlos and we are very excited to begin creating a network of doctors concerned with vEDS.
In early November, Alex and I traveled with our grandparents to Johns Hopkins in Maryland to meet Dr. Hal Dietz . Dr. Dietz is one of a small handful of doctors in the United States who focuses on vEDS and has been one of the most promising connections we've made to date. Alex and I immediately connected with Dr. Dietz and his team and were very happy to discover that the team is actively researching implementable treatments for people like us. In addition to focusing on research, we are grateful to say that Dr. Dietz also sees patients and will take on a significant role as part of our medical team.
As the first step in our effort to find a cure for vEDS, we have established the 'Alison Aldredge Fund for Vascular Ehlers Danlos Syndrome' at the Institute of Genetic Medicine at Johns Hopkins. All funds donated are fully tax-deductible will go directly to supporting Dr. Dietz and his team as they work to cure Vascular Ehlers Danlos.
This step marks the beginning of a life-long commitment to supporting research and access to medical care and we look forward to supporting the efforts of doctors who continue to fight for a cure. Thank you so much for helping us on this journey. My mother, I know, would be so mortified to be the center of attention, but would be so proud of her friends and family."
I wrote "Song for Alison" after I was asked to play some tunes at the memorial service, and performed it for the first time that day. All of the proceeds from this download page will go directly to the fund at Johns Hopkins. I've paired it with another sad song that has less to do with Alison and more to do with being sad in New York City after graduating college, but I hoped it would sweeten the deal.
If you'd like to give directly to the hospital, you can use this link: secure.jhu.edu/form/igm
and designate the fund in "About my gift." For more information on the disease, you can visit the Ehlers-Danlos Foundation website at ednf.org/vascular-veds-emergency-information
Big thanks to Matt Campbell for letting me christen his dreamy studio in Bushwick, and to all of you for your generous ears and wallets. <3