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April 2010 Boston Marathon Fundraiser for NADF. Jay Ross ran in the Boston Marathon on April 19, 2010 in memory of his sister, Jill Marie Ross. Proceeds from the fundraiser were donated to NADF. This flyer tells the story of his sister's death due to ignorance of Addisons disease by a prescribing physician. Check Out This Video
NORD Funding Available for APS Type 1 Seed Grant for NADF.
The National Organization for Rare Disorders (NORD) is accepting applications for a clinical research seed grant related to APS Type 1 (Autoimmune Polyglandular Syndrome, Type I). The grant is for $50,000, and is to be used for a two-year study. The submission deadline for initial abstract with letter of intent was May 17, 2010.
The purpose of the NORD Research Grant Program is to encourage meritorious studies designed to improve the diagnosis and/or therapy of rare disorders. Protocols that will focus on early detection, diagnosis, or treatment (pharmacological, devices, surgery, or dietary) will be given priority. The grant is international and is open to researchers worldwide.
The grant program is administered by Stefanie Putkowski, RN, of the NORD staff. Information and application forms for the 2010 NORD Research Grants are available online at http://www.rarediseases.org/research/requests. Questions or requests for application forms may be directed to Ms. Putkowski at 203-744-0100 or research@rarediseases.org. Get the applicantion form here. December 2009
Happy Holidays from the National Adrenal Diseases Foundation. The Hair Cortisol study announced here last July has come to an end. The study was done by Dr. Stan Van Uum in London Ontario Canada. Dr. Uum sends his thanks to those that contributed to the study. They received queries from almost 200 interested patients and more than 100 participated from all across North America. They are now analyzing the data and the results should be out shortly. October 2009
Buy Mary Kay, Support the NADF
The NADF is partnering with Terri Pollard, a Mary Kay sales consultant for a great new fundraiser! She has generously agreed to donate 50% of retail profits (minus shipping and handling) of any order to the NADF. You can purchase merchandise from her website, www.marykay.com/terripollard. Just be sure to mention the NADF when you place your order. Thank you Terri!
Ellen Whelan to Donate Profits of Handbag Sales to NADF
Ellen Whelan, of the Southern Florida Support Group, will donate a percentage of proceeds from the sale of her handmade handbags to the NADF. Just visit her website, www.peaceofmindhandbags.com to see all the stylish designs and make your purchase. Thank you Ellen!
September 2009
Dr. Margulies' Flu Vaccinations Recommendation
Influenza season is coming fast upon us, and NADF Medical Director Paul Margulies, MD, FACE, FACP recommends that all adrenal insufficient patients (Addison’s disease, 2ndary adrenal insufficiency, congenital adrenal hyperplasia, adrenomyeloneuropathy, et al.) get both the H1N1 (a.k.a. Swine Flu) vaccination when it is available (in early October, is being reported), as well as their regular yearly flu vaccination.
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Read about Juan Miguel's story here. 
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THE CHRISTIE M WILLIAMS
RACE FOR AWARENESS
Thank you for your generous donations to the Christie M. Williams Race for Awareness. Together we raised over $8,000! Look forward to seeing everyone next year! <race results>
In memory of
Christie Marie Williams
Christie, at the age of 23, passed away on March 3, 2009 in her San Jose home. Her death was related to Addison’s Disease, which she was diagnosed with last June.
The family is asking, in lieu of flowers, that donations be made in her name to the National Adrenal Disease Foundation. Read the Euology. |
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