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 2017:

 

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 coast. 


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.