NEALS Attends 2015 National ALS Advocacy Day and Public Policy Conference
The event which brought together people with ALS, representatives of nearly every major ALS organization, and advocates from across the country, provided a forum to share ALS stories, hear about the latest research opportunities and strategies, and urge Congress to make a difference in the fight against ALS.
The Northeast ALS Consortium (NEALS) was pleased to participate in The ALS Association’s 2015 National ALS Advocacy Day and Public Policy Conference, held in Washington, DC from May 10 through May 12. The event which brought together people with ALS, representatives of nearly every major ALS organization, and advocates from across the country, provided a forum to share ALS stories, hear about the latest research opportunities and strategies, and urge Congress to make a difference in the fight against ALS.
The State of ALS Research
The ALS Association’s Chief Scientist, Dr. Lucie Bruijn, shared the latest news about The Association’s TREAT ALS program and other promising developments in clinical trials and ALS research, including how the Ice Bucket Challenge is advancing ALS research.
It is with the help of the TREAT ALS program that NEALS has been able to build the trial infrastructure needed to rapidly conduct clinical research in ALS. Clinical research is a necessary step in the process of translating scientific advances into new treatments for people with ALS. Dr. Bruijn urged those interested in clinical research to take advantage of the NEALS website, http://www.alsconsortium.org, which was designed to break down the barrier to ALS clinical research information. The NEALS ALS Trial Liaison is available to help users navigate the website and answer questions about clinical research and can be contacted at (877) 458-0631 or via email at email@example.com.
Making a Difference on Capitol Hill
The success of the Ice Bucket Challenge presented the ALS community with new opportunities to make a difference in Washington, DC. The level of ALS awareness on Capitol Hill has never been greater, and advocates seized that increased visibility when they shared their stories with Members of Congress to generate continued funding for ALS research and support for policies that can enhance the lives of people with ALS.
ALS Research Ambassadors
Duke University Medical Center’s world renowned ALS research advocate, Dr. Rick Bedlack, hosted the first ever meeting of the entire ALS Research Ambassador community during National ALS Advocacy Days. The meeting provided NEALS’ ambassadors with more opportunities to get involved in ALS research advocacy including:
- Cytokinetics is looking for patient and caregiver input toward designing their next trial, especially with regard to understanding the meaningfulness of SVC measurements. If interested, contact Amy Laverdiere at firstname.lastname@example.org.
- Synapse is looking for patient and caregiver input toward designing their next study and determining meaningful measures for their diaphragm pacemaker. If interested, contact Steve Sullivan at email@example.com or Mike Fritz at firstname.lastname@example.org.
- ALSA is looking for patients and families to participate in their ALS Drug Development Guidance for the FDA. If interested, contact Pat Wildman at email@example.com.
- The FDA is looking for Patient Representatives to advise them on issues related to ALS. Details and the process for applying can be found here http://www.fda.gov/ForPatients/About/ucm412709.htm.
- The CReATe Consortium needs help getting patients with ALS, PLS, PMA, HSP and FTD to sign up for their contact registry. Details and the process for signing up can be found here https://www.rarediseasesnetwork.org/cms/create/patients/Contact-Registry.
Prior to May 11, the Research Ambassadors completed a Clinical Research Learning Institute (CRLI) training session to become NEALS research liaisons, helping to raise awareness about ALS research and encourage participation in clinical trials.
For more information on the conference, please visit The ALS Association website: http://www.alsa.org/advocacy/advocacy-day/.