Promising to renew their challenge every August until there is a cure, the two ALS patients who co-founded theALS Ice Bucket Challenge in 2014, Pat Quinn and Pete Frates, made good on that promise when they kicked offthe 2015 ALS Ice Bucket Challenge on July 31 in Boston. For Texans, however, the official kick off took place atHouston’s Minute Maid Park on August 2 as the Houston Astros enthusiastically took the challenge. (imagesavailable Aug. 2)
“Last year gave the ALS community hope for the first time in a long time,” said Quinn, who was diagnosed withALS two years ago. “But we still need the public’s help to keep the momentum going. We intend to do the ALSIce Bucket Challenge every August until we find a cure.”

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a progressiveneurodegenerative disease that leads to paralysis due to the death of motor neurons in the spinal cord andbrain. There is no known cure for the disease. On average, people live only 3-5 years once diagnosed, andthere is just one drug approved to treat ALS, prolonging a person’s life by only 2-3 months.

For the beleaguered warriors on the front lines of this disease, last year’s global ALS Ice Bucket Challengephenomenon was a godsend, raising nearly $220 million for ALS research and patient care. Of that, roughlyhalf was directed to The ALS Association.

Tanner Hockensmith, Executive Director of The ALS Association of Texas, acknowledges the enormity of theresponsibility in fighting a disease like ALS and in stewarding the unexpected windfall from the Ice BucketChallenge. “For people with ALS, time is of the essence, and a cure cannot come quickly enough,” saysHockensmith. “And yet we are obligated to be strategic and thoughtful in how we expend resources. We mustmaintain the rigorousness with which we assess research opportunities while also ensuring resources remainavailable to help improve quality of life for those currently living with the disease.” Hockensmith concedes it’sa challenging balance to maintain given what’s at stake.

While there has been no shortage of public commentary about how the money should be spent, The ALSAssociation has announced how it intends to devote the money (see spending info graphic). The organizationhas directed the bulk of the money, $67 million, towards research efforts, working to ensure the mostpromising projects are funded to accelerate the search for treatments and a cure, with projects focused on fivekey areas: biomarker discovery, gene discovery, disease model development, clinical studies and drugdevelopment.

To that end, the organization will increase its annual funding through various research award opportunitiesand fund four collaborative global research initiatives:

  • Project MinE — global sequencing effort to identify new genes linked to sporadic and familial ALS
  • The Neuro Collaborative — Three research labs working together to find effective treatments
  • The New York Genome Center — repository for ALS genome sequencing data that increases number ofgenetic samples scientists can study
  • ALS ACT — joint project aimed at expediting clinical trials and searching for biomarkers as indicators ofdisease

The organization has also directed $23 million to provide more support to people living with the disease, andincrease access to multi-disciplinary care at ALS Association Certified Treatment Centers of Excellence. Thisincludes:

•Doubling grants to ALS Association Certified Treatment Centers of Excellence, which offer state-of-the-artmulti-disciplinary care and provide a home for clinical trials to find treatments for the disease. This includesincreased funding for Certified Treatments Centers in both Houston and San Antonio, and first time funding fora third clinic in Austin currently going through the credentialing process..

  • Offering grants to ALS Association chapters to help improve patient access to care in unserved orunderserved communities. This includes resources to extend the Texas Chapter’s reach into far west Texas, theTexas Panhandle and South Plains areas.
  • Supporting the ALS Untangled initiative to help fund the review of non-traditional treatments for ALS.
  • Improving education materials for people newly diagnosed and those who continue to manage the disease.

Texans with ALS are seeing tangible benefits from the success of last year’s Ice Bucket Challenge. The ALSAssociation of Texas has initiated a general grants program through which people with ALS and their familiescan receive grants to retrofit their homes to accommodate their changing mobility needs as the diseaseprogresses, help cover expenses for transportation to and from ALS clinics, help pay for respite care, and assistwith some minor medical equipment purchases. Additionally, the Texas Chapter has been able to hire anadditional Case Manager to cover the growing caseload of newly diagnosed patients, particularly in northTexas, and expand its equipment loan closets inventories from which it can provide patients with electricwheelchairs and communications devices.

Reflective of the wishes of the founders of the Ice Bucket Challenge and their families that all ALS relatedorganizations benefit from the increased awareness and resources and work collaboratively wheneverpossible, a new dedicated website – www.alsicebucketchallenge.org – has been launched to inform peopleabout ALS and the ALS Ice Bucket Challenge, and to make it easier for them to donate to The ALS Associationor one of 14 other ALS organizations. This represents the largest coordinated effort of ALS nonprofits to date,and many of the organizations hope to work more closely together not only on awareness and fundraisingactivities such as the ALS Ice Bucket Challenge, but also on providing crucial patient services and acceleratingALS research.

“The ALS Ice Bucket Challenge embodies all that is great about the people of Texas,” says Hockensmith. “It’sabout fun, family and friends, and helping our fellow Texans who are in the fight of their life. Nobody canpredict when the turning point in this fight will come, but it’s imperative that we all commit ourselves tosupporting this campaign until that day does finally arrive.”

IMPORTANT LINKSwww.alstexas.org
http://www.alsa.org/fight-als/ice-bucket-challenge-spending.html

http://www.alsa.org/fight-als/ibc-progress.html

http://www.alsa.org/fight-als/ibc-instructions.html

www.ALSIceBucketChallenge.org