2017 Year in Review
Remarkable Opportunities, Growth and Results
Everything we do at The ALS Association Golden West Chapter
advances the search for effective treatments and a cure for ALS. Our efforts
are made possible by dedicated people like you who invest in our mission and
share our vision – to create a world
without ALS. As we head into the New
Year, we are proud to celebrate some of what we have accomplished together in
Advancing the Search for a Cure — The World is Our Lab
Today The ALS Association is funding more than 150 active research
projects in 12 countries around the world. This year marked the first FDA
approval of a new treatment for ALS, Radicava (edaravone), in over 22 years.
This success may be the first in a number of new treatments that will become
available to the ALS community in the near future. Keenly aware of obstacles to
accessing new drugs and participating in clinical trials, the Chapter has
identified procedures to expedite reviews of insurance coverage denials of new
medications and increased communications with people with ALS to promote
enrollment in clinical trials and ALS research projects.
The Golden West Chapter also launched a new research
initiative, the ALS Cures Accelerator
Fund, to provide critical support to promising pre-clinical trial projects
that are likely candidates for further therapy development. Similar to a venture capital fund, the ALS
Cures Accelerator Fund will consist of pooled resources and the Association
will retain an interest in investments that yield results, which will be reinvested
in new projects. This new initiative will operate in concert with the Larry and Isabel Barnett Drug Development
Program, part of The ALS Association’s comprehensive Translational
Research Advancing Therapies for ALS (TREAT ALS™) research portfolio.
Providing Compassionate Care and Support — Doing More for More People Today
The ALS Association Golden West Chapter provides compassionate care
services, at no charge, to more than 1700 people living with ALS and their
loved ones in California and Hawaii. The Golden West Chapter is the largest ALS
care service organization in the country and is affiliated with more than 20
multidisciplinary ALS clinics. New
clinic partnerships are planned for 2018.
The Golden West Chapter provides access to
professional care management, expert multi-disciplinary clinical care,
clinical trials and research, vital equipment loans, monthly support
groups, valuable community education opportunities, and uplifting
outreach events. In addition, the Chapter strives to identify and
address the diverse challenges and needs of the ALS community. For
example, Golden West Chapter staff were among the first responders to
offer enhanced resources and assistance to approximately 90 families
affected by wildfires across California.
The Chapter also partnered with
Hope Loves Company, a nonprofit dedicated to providing educational and
emotional support to children and young adults who had or have loved one
with ALS, to launch their first weekend camp program held on the west
Driving ALS Awareness and Advocacy — Sharing Our Stories to Increase Support
In 2017, The ALS Association and ALS advocates had great success with
many important public policy efforts on the federal level. In addition
to securing funding for scientific research, The ALS Association was
responsible for introducing legislation to eliminate the 5-month waiting
period for SSDI/Medicare. Advocates also worked to secure support for
the Complex Rehab Technologies bill to protect access to customized
wheelchairs and accessories.
At the state level, The ALS Association Golden West
Chapter continues to pursue ways to make access to medications, home
health care, and durable medical equipment easier and more affordable.
The Golden West Chapter is also seeking funding from the state to offset
costs related to comprehensive clinical care and care management. For
the first time, this year, Hawaii’s ALS community is benefiting from
public funding from the City and County of Honolulu as well as the
County of Hawaii in support of our Chapter’s services.
The Chapter’s community outreach and awareness activities continue to
grow. With strong support, our 11 Walks to Defeat ALS throughout our
service area and the 13th Annual Napa Valley Ride to Defeat ALS and Walk
reached new milestones of participation and fundraising. Our Champions
for Care and a Cure celebrations paid tribute to notable and deserving
ALS community heroes, and engaged new sponsors and partners in the
urgent fight to defeat ALS.
You make all of this possible – Thank you!
The Golden West Chapter relies on the generosity of individuals,
families, companies, and philanthropic organizations to make what we do
possible. This year, the Golden West Chapter became accredited by the BBB Wise
Giving Alliance. In addition, for the
fifth consecutive year, Charity Navigator, America’s largest independent
charity evaluator, has awarded the Golden West Chapter its highest rating
possible – four stars – in recognition of our ongoing commitment to sound
fiscal management, accountability, and transparency. Only 7% of charitable organizations rated
receive this exceptional distinction.
It is only together that we will defeat ALS.