Dear Alström Family and Friends,
For many years ASI has been “sailing to windward” against the wind and often against the cultural tides that decreed that rare diseases were “orphan diseases” and somehow did not merit the same interest or support garnered by grander national and global health issues. Despite the “knock down” we all received from the death of “Mama” Jan Marshall in September 2016, life continues and winds shift, and ASI is now continuing Jan’s legacy and churning along under full sail once more!
Since I wrote a year ago, ASI, with your help, has not only continued to support its three core programs (Research, Education, and Family Support), but it has also been especially successful in finding favorable currents to exploit in its quest to treat and ultimately cure Alström Syndrome. ASI could not have reached the following marks without its able-bodied crew – those of you who have been on board for years and those of you who have just joined the team! The highlights are:
- Continuing to work with Genetic Alliance, other disease advocacy organizations, and the private sector to refine ASI’s on-line registry known as ARC, which stands for Alström Research Connect and Family Exchange, an opportunity to foster participant-centric research leading to interventions.
- Planning and executing the 9th Family Conference, Medical Clinic, and Scientific Symposium in May in Galveston, TX. Affected children and adults, their parents and siblings, physicians, researchers, and volunteers were all there. Medical experts shared the results of new research and new insights into the disease process; many children and parents met someone else “just like them” for the first time and shared both tears and laughter; and, importantly, all parents and adult patients had direct access throughout the weekend to caring professionals, all while helping to establish research priorities of concern to those actually living with the syndrome.
- Collaborating closely with Greater Baltimore Medical Center while finding the funding to maintain the Jan D. Marshall Center of Excellence for the Treatment of Alström Syndrome where we hold twice annual multidisciplinary clinics. Our first Alström patient has received his cochlear implants there!
- Expanding the Alström Syndrome Knowledge Hub (ASK), a freely available anonymized data base comprised of extensive medical records collected over several decades.
- Taking the first steps towards establishing both Alström Global and a Global Research Network, perhaps the key to winning this particular race and retiring the boat (and its captain!).
We know that with your aid we can bring these projects to fruition and improve the lives of those with Alström Syndrome; we know that with your support we can help to ease the pain of parents and siblings; we know that with your help our efforts may well contribute in a remarkable way to the health and welfare of people everywhere. Please join us in a true sense of relevance and accomplishment. Please contribute today!
If you wish for more information about Alström Syndrome, please contact us. For ease of on-line donation, fill out this form. If you would prefer to send a check, mail it to ASI, 14 Whitney Farm Road, Mt. Desert, ME 04660, and you’ll receive a tax deductible acknowledgement. If you have questions or require additional information, please contact me by phone at (207) 244-7043 or by e-mail at
ro************@al*****.org
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Thank you for caring! Thank you for making a difference! Thank you for your generosity!
Sincerely,
Robert P. Marshall
Executive Director
Alström Syndrome International
