The ALS Raising HOPE Foundation
At age 59, Roger C Long had built a successful business and along with his wife of 40 years, Darlene, had raised a wonderful family. In 2009 while looking forward to retirement and spending more time with their grandchildren Roger, received the diagnosis of Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig’s Disease.
As with other terminal illness patients, his doctors advised him to “put his life in order”; he did that. However that was not enough, he wanted to know “what needed to be done” to end this disease once and for all so others would not have to face it . Together Roger and Darlene armed themselves with knowledge about this disease. What they learned shocked them more than the diagnosis itself.
Even though ALS was first recognized as early as 1874, no progress had been made in either treatment or a cure for over a century. Only in the past few decades had treatment inched forward. Federal funding for research had dwindled and all but dried-up and the most promising research was severely slowed. Add to that, ALS was classified as an “orphan disease”, meaning it is not wide-spread enough to garner the research funding and the expertise needed to accurately diagnose and care for ALS patients.
Guided by their knowledge and determined to help make a difference, Roger, Darlene, and two close friends traveled to the 2010 ALS National Advocacy Conference held in Washington DC. There they met with Congressmen, ALS medical researchers and other ALS patients and their families. Moved by the personal, heart-wrenching stories and frustrations of the hundreds of ALS families who eloquently spoke before Congressional members, representing 48 states, they returned home with renewed tenacity to not let ALS “beat” him or anyone else.
Thru their resolve the ALS Raising HOPE Foundation, an all-volunteer, non-profit organization was established in 2010. Since it’s inception it has grown to include more than 500 members. Thanks to the help of some very generous organizations and donors, the foundation has generated over $350,000 for research from fundraising events held in Upstate New York, Haymarket, Virginia, Sandia Park, New Mexico and Boston, Massachusetts.
Today, two brilliant and compassionate clinicians, Drs N Atassi and J Berry, of The Amyotrophic Lateral Sclerosis (ALS) Multidisciplinary Clinic at Massachusetts General Hospital under the direction of Dr Merit Cudkowicz, are working directly with endowments from the foundation’s previous fundraising to develop biomarkers for ALS to expedite diagnosis and shorten trial duration.
The ALS Raising HOPE Foundation is determined to follow the vision of Roger and Darlene Long to eradicate ALS and all neurodegenerative diseases so one day soon, we all will be able to say, “We support neurodegenerative disease survivors”. We firmly believe a cure is not only possible, but imminent.
The Mission of the ALS Raising HOPE Foundation
Raise awareness of ALS
Raise HOPE to empower patients with ALS to live fuller lives
Raise funds to support research for a cure
Board of Trustees
The ALS Raising HOPE Foundation is a tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law.