WASHINGTON, Nov. 17, 2014 /PRNewswire-USNewswire/ -- The ALS Association announced today its Board of Trustees has appointed three new members, including Nancy Frates, mother of Pete Frates, who has ALS and was widely credited with helping the Ice Bucket Challenge become a worldwide phenomenon this summer. The Board also appointed Christi Kolarcik, a scientist studying ALS, and Ted Harada, who has ALS and has been an advocate for the patient community.
"The Board is honored to have three new deeply qualified individuals to help guide and inform our decisions moving forward," said Bill Thoet, Chairman of the Board of Trustees. "The passion Nancy and Ted have shown as advocates for those living with ALS is unparalleled, and we're very fortunate to have someone with Christi's scientific expertise."
ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects neurons (nerve cells) in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease.
The ALS Association raised $115 million in six weeks as a result of the Ice Bucket Challenge. It recently announced a plan to double its budget moving forward and triple the amount of money it spends on an annual basis on research.
Harada said: "I am very excited and honored to have the opportunity to serve the entire ALS community and represent patients and their families as their voice on the National Board of Trustees. In my opinion, The ALS Association has established itself as the premier organization that represents the many needs of the ALS community from research, patient care and support as well as ensuring that patients' needs and concerns are being represented in the public arena."
Kolarcik said: "My nomination and appointment to the National ALS Association Board of Trustees is an honor, and I look forward to the opportunity to serve the patients and families affected by this devastating disease."
About Nancy Frates
On March 13, 2011 Nancy's 27-year-old son Peter was diagnosed with ALS, Lou Gehrig's Disease. Since that day, she has immersed herself in the ALS community. In the past two years she has travelled and networked to the offices of CEO's, Senators, Congressmen, Top Doctors, and governmental authorities mostly the FDA. She has testified in Washington D.C. to an FDA panel and has initiated and executed petitions regarding important issues affecting the ALS communities. Along with other family members, Nancy runs the Pete Frates #3 Fund, which raises money to aid Pete in his battle with the disease. Team Frate Train, as Pete's supporters are known, has grown over the past couple of years. They have a website, sell Frate Train Gear and run marquee events for the fund as well as supporting ALS organizations through their events.
In August 2014, the Frates family and supporters inspired the ALS Ice Bucket Challenge to go viral. During August and the months following she has done many domestic and international television, magazine and website interviews, and speaks at events around the country.
About Ted Harada
Ted considers himself first and foremost a family man. Ted and his wife Michelle are the proud parents of three wonderful children. The family resides in McDonough, Georgia. In August of 2010 their family was turned upside down when Ted was diagnosed with ALS. In March of 2011 and again in August of 2012 Ted was able to participate in a FDA clinical trial for ALS being conducted at Emory University Hospital. Since being diagnosed with ALS, Ted has utilized his passion and skills to be a tireless advocate and voice for the ALS community at both the State and National level. Ted joined the Board of the Georgia Chapter in September of 2011. Prior to being diagnosed with ALS Ted worked in the Logistics and Transportation Industry where he worked as a Director for both FedEx Ground and DHL.
About Christi Kolarcik
Christi's scientific career has been focused on understanding ALS. While studying with Dr. Robert Bowser, they identified protein biomarkers for ALS and then investigated the implications of protein changes in patients with ALS. Upon graduation, Christi trained in neural engineering including improving the biocompatibility of electrodes designed to interface with the nervous system (brain-computer interfaces). In her current position, she is leading an ALS-based initiative through the University of Pittsburgh Brain Institute involving both basic science and neurotechnology components. As a graduate student, she also became a part of the local ALS community through the ALS Association Western PA Chapter. She first volunteered to help with the planning of the 2006 Walk to Defeat ALS® and has served as the chair of this event for the past four years. In 2011, Christi was honored to receive the Rita G. Patchan Volunteer of the Year Award and to be elected to the Board of Directors. She currently serves as the Vice Chair of the ALS Association Western PA Chapter and Chair of the Strategic Planning Task Force.
About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig's Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.alsa.org.
SOURCE The ALS Association