Bike for Kam: Paving the Way for Treatment for Hereditary Inclusion Body Myopathy
Bike for KAM It’s not about finding the cure, it’s about funding the cure. and Paving the way for treatment. In 2004, my physicians in Michigan told me I had no hope. I was told I would never meet another Hereditary Inclusion Body Myopathy (HIBM) patient nor would I see research being done in [...]
Remi Savioz Glut1 Foundation Virtual Run: May 6
Sunday, May 6, 2012 Running for the Remi Savioz Glut1 Foundation! Every mile “Makes a Difference” Every Step is an opportunity to finding a cure. On Sunday, May 6, 2012 James Dylan’s mom June, along with many other families, will be participating in an important challenge for her son and the Remi Savioz Glut1 [...]
Two-time Olympic silver medal winner: A champion for Hope
Adam Nelson Champions Hope Written by: Alan Abrahamson Through the eyes of two families affected by a rare disease, Alan Abrahamson, a seasoned writer for 3 Wire Sports, brings to us an amazing story of hope for Sanfilippo Syndrome and Niemann Pick Type C. In his writings, Alan delivers a realistic view of living [...]
‘Rock the Cure’: Rocking Out for Dravet Syndrome and Eosinophilic Esophagitis
Bands will ‘Rock the Cure’ this weekend by Kelli Easterling Richmond County Daily Journal Rockingham, NC – Reported on April 10, 2012 Local contemporary Christian bands have joined forces to “Rock the Cure” this Saturday, while “rocking out” on two stages in the Winn Dixie parking lot in Rockingham from 11 a.m until 4 p.m. “There [...]
Invisible Disease: What is FMD?
Invisible Disease? Fibromuscular Dysplasia A Guest Blog by: Sarah E. Kucharski FMD CHAT, Founder Many fibromuscular dysplasia patients look, for all appearances, healthy. No one can see arterial stenosis from the outside. Having an “invisible” disease makes it is easy for doctors, friends, family members, and general members of the public to forget that just because [...]
Rickshaw Run 2012: Cool Runnings for Sanfilippo Syndrome
On March 22, R.A.R.E. Project announced the amazing endeavors of Joe and Paul, two adventurists who planned to participate in the RickShaw Run to support Sanfilippo Syndrome with R.A.R.E. Project as their charity of choice. On April 6 - Joe and Paul, a.k.a. team Cool Runnings, began their adventures in India to fight for the [...]
A Fifth Season…Brightening the Landscape of Batten Disease
Rare Disease Event: Three Foundations Form First Chicago Partnership To Fight LINCL-Batten Disease Jasper Against Batten, Hope 4 Bridget and Noah’s Hope To Collaborate with Partnership For Cures One man ran across the United States to help children with Batten disease. Will you drive across town to help? Please join us on May [...]
Sanfilippo Syndrome: What is a RickShaw?
What is a RickShaw? Good question! The RAREproject received the photo below of a RickShaw by Team Cool Runnings. A RickShaw is a 3 tiny-wheeled vehicle frequently used for carrying passengers in the Middle East. It is meant for short-distances -a direct contrast to the RickShaw Run being held in April which will cover [...]
It’s a Wrap – World RARE Disease Day 2012
GLOBAL GENES PROJECT E-NEWS DANA POINT, Calif. – The 5th Annual World Rare Disease Day took place February 29, 2012 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. Once again, Global Genes Project™ helped support and [...]
Rare Disease Day: Together, We Can Do More
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a [...]