January 2005 ALS-RR Newsletter
It’s a bit late to the party, I know…but, as they say, “better late than never.” You can download the newsletter using the link below, or just peruse the text of the newsletter after the break.
January 2005 ALS-RR News You Can Use
(requires Adobe Acrobat Reader to view)
Nota bene: Page two is upside-down, probably due to how the printers created the document. Until this is corrected, you’ll either have to use the Acrobat Reader’s “Rotate Clockwise” function twice, or stand on your head. It’s your choice.
ALS Race for Research
News You Can Use
January 2005
“Doing nothing is not an option.” — Christy Sloan
What Others Have Been Doing
Researchers, scientists and practitioners all over the country have been hard at work searching for treatments and a cure for ALS and related diseases. A great deal of the money that funds the most meaningful research related to ALS comes from individuals and groups like us that have been personally affected by ALS. Thus, dollars from friends and families are directly responsible for progress that has been made.
There are promising new drug trials, and networks of non-profits with the same goals are working together to screen a higher number of drugs. There have been recent important developments in gene therapy and nerve repair, and scientists are engaged in exploration of major cell pathways to study the causes and potential remedies for cell death related to ALS and other diseases. Further, scientists have been able to pinpoint an inherited ALS gene.
Today there is a much higher level of diagnostic service and coordinated care for ALS patients, something that was very important to Christy and her family. The Hope Center is designed to focus upon ALS patients, and the advocacy groups they have formed have successfully encouraged doctors, researchers and scientists across the United States to share their resources and information regarding ALS and related diseases. This action goes a long way toward the prevention of duplicative efforts and promotion of discovery of information to assist specific studies.
We want to mention a new foundation we have decided to fund entitled Hope Happens. Christy traveled to St. Louis, Missouri several years ago for the ALS Hope Consortium which was hosted by the family that founded the organization that is now Hope Happens. At that, time she recognized our similar goals and admired their organization. Since Christy’s, visit Hope Happens has changed its mission to include the launching of The Hope Center for Neurological Disorders at Washington University. The Hope Center focuses upon Alzheimer’s Disease, strokes, Parkinson’s Disease, Multiple Sclerosis, spinal cord injury and Cerebral Palsy. A discovery in any one of those disorders may lead to a discovery in another.
Next time you are surfing the net at home or at work (you know you do), take a look at some of the organizations we have funded that are listed under the “Distributions” heading. We think you will find their stories and their work interesting and impressive.
What We Have Been Doing
The two central goals of ALS Race for Research remain the same. The team seeks to raise money to help find a cure for the disease and promote awareness and knowledge about ALS.
Since the wonderfully successful golf tournament in Asheville, NC two years ago, friends have raised money through “athon” sponsorships, in-home events and their own solicitations. In addition, many friends sent memorials in honor of Christy to ALS Race for Research. As always, we are thankful for everyone’s generosity.
During the Spring of 2005 ALS Race for Research will host a diverse and exciting show of art (Carol Bomer, Wendy Whitson, Lisa Dodd), photography (Angelo Sciulli, Kelly Giezentanner, Jennifer Pickering) sculpture, pottery, jewelry, healthy gourmet cooking, knitting as an art form and more in beautiful Asheville. We have also invited Jamie Heywood of the ALS Therapy development Foundation to come and give his informative class, ALS 101, for those who have questions about ALS. It will be a great way to learn and support ALS-RR! And, please check out www.runmattrun.com for information regarding Matt Walters’ quest for the Ironman while raising funds for ALS-RR. Go Matt!
Distributions
This year the ALS Race for Research team has distributed money to four organizations that we believe fulfill the mission and the goals set out by ALS Race for Research.
- We distributed $25,000 to the Carolinas ALS Endowment c/o Carolinas HealthCare Foundation located here in Charlotte for research efforts and diagnostic care at the Carolinas Neuromuscular ALS-MDA Center (www.carolinashealthcare.org/services/brainspine/alscenter.cfm).
- We distributed $25,000 to Hope Happens in St. Louis, Missouri, a foundation dedicated to “finding a cure for ALS by funding progressive research and in the process creating a new methodology for funding, researching and developing treatments for other neuro disorders” (www.alshope.org).
- We distributed $10,000 to the ALS Therapy Development Foundation in Cambridge, Massachusetts which
uses “entrepreneurial spirit and techniques to aggressively seek out, develop and deliver promising therapies to slow, arrest and cure ALS” (www.als.net). - We distributed $10,000 to the Robert Packard Center for ALS Research at Johns Hopkins which has a very distinguished record as a leading center for ALS Research and advancements (www.alscenter.org).
Honors and Recognition
The head of Wachovia’s Corporate and Investment Banking Human Resources department established “The Christy,” an award established to formally recognize extraordinary achievement of a CIBHR staff member each year. The annual award is intended to honor outstanding individuals for performing their duties in a superior fashion and for their exemplary attitude of courtesy, enthusiasm and professionalism toward their colleagues and clients.
Asheville Christian Academy has established the Christy Sloan Memorial Award. The award is designed to encourage and motivate students to “Race to Win” doing their best, not necessarily the best.
In addition, the Fall 2004 issue of ALS Alert, the newsletter from the Robert Packard Center for ALS Research at Johns Hopkins, featured Christy in an article entitled, “A Free Spirit Comes Home”. The Robert Packard Center’s 2004 Annual Report also featured Christy in its “Grass-Roots Help” section.
Missing Christy
As most, if not all, of you are aware, Christy Sloan died peacefully on Sunday, September 19, 2004, in Asheville, North Carolina. Christy passed away surrounded and supported by her family and by her faith, both of which sustained her before and during her fight against ALS.
Christy’s memorial service was truly a meaningful celebration of her life, which touched the lives of so many others. The service captured her spirit so well and provided a special opportunity for those who loved her to reflect on her exemplary life. As one of her friends put it, “the extraordinary ordinary life of Christy Sloan.”
We desperately miss Christy, but find ourselves inspired daily by her courage and her remarkable zest for life fully lived. We are encouraged by the many exciting and generous people and organizations that continue to work toward finding treatments and a cure for ALS.
posted Monday, February 21, 2005 by Scott Parkerson in Newsletters