The Virginia Hemophilia Foundation will host a Dads in Action Family Event on Saturday July 13. The event is open to parents and caregivers and kids ages 6 and older. It will take place at Peak Experiences Indoor Rock Climbing in Midlothian,VA. For more information about the event please click here.
Archive | EVENTS
Bikin for Bryson Ride for Hurler Syndrome
EVENTS June 24, 2013
Bikin for Bryson raised over $5,000 for Bryson, who was recently diagnosed with Hurler Syndrome. In early 2013 Bryson Spear was diagnosed with Hurler Syndrome and in May 2013 he received a bone marrow transplant. Organizers hope to make Bikin’ for Bryson an annual event.
Myasthenia Gravis Walks
EVENTS June 21, 2013
There are 16 Myasthenia Gravis walks left this year and there is still time to sign up. The walks help raise awareness and funds for Myasthenia Gravis. To view a complete list of the 2013 walks please click here.
Von Willebrand Disease Educational Dinner for Women
EVENTS June 12, 2013
Hemophilia of North Carolina will host a Von Willebrand Disease Educational Dinner for Women and SOAR Planning Session on June 24 at 6:30. The dinner is open to women and girls ages 12 and up and will take place at the Hemophilia of NC office in Morrisville. For more information and registration please click here.
Myasthenia Gravis Awareness Month
EVENTS June 10, 2013
June is Myasthenia Gravis Awareness Month. The Myasthenia Gravis Foundation of America is posting daily tips throughout the month on their Facebook page. To learn more about Myasthenia Gravis, please click here.
Kawasaki Disease Video
EVENTS June 5, 2013
The Kawasaki Disease Foundation has created a Parents Guide to Kawasaki Disease video. The video includes information about symptoms, treatment, and care. To view the video, please click here.
Kawasaki Disease Foundation Challenge
EVENTS May 31, 2013
The Kawasaki Disease Foundation Challenge is an online fundraiser to raise money to help find a test for Kawasaki Disease. The Gordon and Marilyn Macklin Foundation will match dollar for dollar up to $100,000 for every dollar that is raised.
WPCNHF Annual Meeting and Walk Kickoff
EVENTS May 29, 2013
The Western Pennsylvania Chapter of the National Hemophilia Foundation will hold its Annual Meeting and Walk Kickoff July 28 at 2:30. The event will take place at North Park in Allison Park, PA. There will be barbecue and and plenty of activities for everyone. For more information or to RSVP to the event, please click […]
Cross-Country Walk for Fabry Disease
EVENTS May 15, 2013
Courtnay Midkiff is walking across the country to raise awareness for Fabry Disease. Fabry Disease is a rare genetic lysosomal storage disorder. To watch an interview that was recorded in Memphis, TN, please click here.
Garden State Chapter of the Myasthenia Gravis Foundation Walk
EVENTS May 8, 2013
The Garden State Chapter of the Myasthenia Gravis Foundation will hold a 5K walk this Saturday May 11. The walk will take place at Packanack Lake in Wayne, NJ at 10 am. Organizers hope to raise awareness about Myasthenia Gravis as well as raise money to help fight the disease. For more information about the walk, […]