There are four Myasthenia Gravis walks in September with the following locations and dates: DC Metro/Virginia 9/21 Delaware Valley – 9/22 Indiana – 9/28 Illinois – 9/29 For more information about the walks or how to registration please click here.
Archive | EVENTS
Delaware Valley Chapter of the NHF Golf Classic
EVENTS August 26, 2013
The Delaware Valley Chapter of the NHF will hold the Annual Golf Classic on September 17 at the RiverCrest Golf Club and Preserve in Phoenixville, PA. There will be lunch at 11:45 followed by a shotgun start at 1:00 pm and cocktails and a dinner buffet after golf. For more information about the event please […]
Pompe Disease Survivors at Duke
EVENTS August 20, 2013
Survivors of Pompe Disease gathered at Duke University medical center to celebrate the success of drug trials that began in 2004. The drug that treats Pompe Disease – Myozyme – was developed at Duke and the trials began there. To read more about the reunion, please click here.
The Amazing Raise
EVENTS August 16, 2013
The Virginia Hemophilia Foundation will take part in the The Amazing Raise on September 18-19. The event is a 36-hour online fundraising event that benefits participating nonprofit organizations in the Richmond and Tri-Cities region. For more information about the event, please click here.
Nevada Chapter of the NHF
EVENTS August 14, 2013
The Nevada Chapter of the NHF is holding a Hemophilia Walk on September 21 at Floyd Lamb Park. The event will feature a 5K as well as one mile walk. For more information about the event, please click here.
Colorado Walk for Hemophilia at Sloan’s Lake
EVENTS August 5, 2013
The Colorado Walk for Hemophilia will be held at Sloan’s Lake in Edgewater, CO on August 17. Walkers will be raising money as well as awareness about hemophilia and other bleeding disorders. For more information or to find a walk near you, please click here.
3rd Annual Gears for Good Bike Ride
EVENTS August 2, 2013
The Hemophilia Federation of America announced the 3rd Annual Gears for Good Bike Ride. The bike ride will be a 156 mile ride from West Virginia to Washington DC and will take place on September 27-29. For more information about the event and how to participate please click here.
Blood Brotherhood Barbecue
EVENTS July 24, 2013
Hemophilia of North Carolina will host a Blood Brotherhood Barbecue on August 3. The event is open to men who have bleeding disorders and their families. For more information and the RSVP, please click here.
Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction
EVENTS July 19, 2013
The National Fabry Disease Foundation will hold the Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction. The event will take place is September 20-22 at Victory Junction Gang Camp in Randleman, NC. Application are currently being accepted. For more information, please click here.
12 Hemophilia Walks in August and September
EVENTS July 17, 2013
There are 12 Hemophilia Walks in August and September. Here is a list of the dates and locations of those walks. August 17 – Northern Ohio Hemophilia Foundation (Aurora) Colorado Chapter, NHF (Denver) September 7 – Rocky Mountain Hemophilia & Bleeding Disorders Assn. (Bozeman, MT) […]