- National Organization for Rare Disorders Now Accepting Grant Proposals
The National Organization for Rare Disorders (NORD) is accepting proposals for seed-money grants of up to $30,000 for a one-year clinical study related to the diagnosis or treatment of Kearns Sayre syndrome. The deadline for abstract and letter of intent is May 15, 2007. For information, go to www.rarediseases.org and click on "Research" section, then click on "Requests for Proposals." Or, write to research@rarediseases.org, or call (800)-999-NORD and ask for Stefanie Putkowski, RN, Research Program Administrator. International applicants are welcome to apply.
- A Resource Regarding IDEA – from NICHY (National Dissemination Center for Children with Disabilities)
NICHCY has just posted three training modules online for the Building the Legacy training curriculum on IDEA 2004.
- Have a cup of Tea for MitoSM!
This "virtual" tea party will be one of the easiest fundraisers you will ever do! UMDF will provide you with the Tea for MitoSM host/hostess kit, including invitation cards, response cards, envelopes and tea bags. (Click here for a sample!) All you have to do is "invite" your family, friends, acquaintances and co-workers to enjoy a cup of tea in the comfort of their own homes and support your cause with a donation to UMDF! If you would like more information about Tea for MitoSM please contact Tania at 412-793-8077 ext. 102 or email taniah@umdf.org.
- Coins for a CureSM is expanding!
UMDF now has attractive, lockable acrylic coin boxes that you can place in stores and businesses around town. The boxes are 6"x4"x3" and have a 6"x5" backdrop with information about UMDF and mitochondrial disease. We can send you one or 100!
We are also introducing our Coins for a CureSM Home Collection Boxes! These boxes are made of cardboard and can be easily unfolded for mailing and assembled for your use. The boxes can be used anywhere in your home where you find extra change, such as your laundry room, kitchen or bedroom. The home collection boxes are currently in production and should be ready by mid-February.
Contact Tania at 412-793-8077 ext. 102 today to get your CoinsSM campaign started or to reserve your home collection box!
- UMDF Joins WE MOVE.org's "Life in Motion" Coalition
Movement disorders are chronic, often painful, and debilitating neurological conditions that affect the ability to control movement. UMDF hopes that in teaming up with WE MOVE we can bring a new useful resource to our members! For more information, visit www.life-in-motion.org.
- Survey Complete!
Thank you to everyone who participated in the UMDF Survey! We had an overwhelming response of 1,225 takers! The information you provided is invaluable to the Foundation.
As always, never hesitate to contact anyone at the Foundation with questions, comments or requests.
- UMDF Ambassador Program!
If you live in an area without a sufficient number of members to start a Mito Group, why not consider becoming a UMDF Ambassador? The Ambassador will work to increase awareness, educate local physicians, and provide support and information to others in the local area. This new program will enable the UMDF through the Ambassador to heighten the local awareness about mitochondrial diseases and expand our presence nationally. If you are interested in becoming an Ambassador, please contact us at info@umdf.org or call us at 412-793-8077.
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