Don and Martha Tuffli, Deborah Taubman, Chapter President and CEO Fred Fisher, and Board Chair Kathleen Rassmussen at the Chapter's Annual Meeting (l to r)

Annual Meeting Gets to the
Heart of What Matters
The “Celebration of Achievement” focuses
on the stories and struggles of ALS patients.

By James Klein

The Skirball Cultural Center was the scene again this year for the Chapter’s Annual Meeting, held on Tuesday, February 10, 2009. Always an opportunity to talk to old friends and make new ones, the event perhaps most memorably featured some very moving tributes to people fighting ALS, to those we have lost to this terrible illness, and to the spirit of compassion and generosity that drives those who support the Chapter. This year’s Annual Meeting was produced by Patrick McMinn, an Advisory Trustee who also organizes the Chapter’s annual summer youth baseball fundraiser.

After a period of mingling, attendees adjourned to the Skirball’s theater, where they were treated to an inspiring and at times heart-wrenching series of videos, slides, and speakers. The evening’s presentations began with a music video of Billy Joel’s version of the Disney classic, “When You Wish Upon A Star,” echoing the event’s title, “When You Wish…”

PALS Irene Moreno

The Chapter’s Board Chair, Kathleen Rasmussen, continued the theme in her opening remarks. “In many ways, at the Greater Los Angeles Chapter, we’re in the business of wishes because so much of what we do begins with one,” she said. “A wish from one of our PALS for a motorized wheelchair…A wish from a family member for assistance in navigating an ALS-related health care or insurance issue. A wish from the children of a newly diagnosed patient for information and options so that they can better understand and care for their loved one...”

Kathleen went on to recognize, “The volunteers, philanthropists, benefactors, community members and friends who have generously given us the opportunity and encouragement to care for so many people over the last twenty years. And I speak to you from my heart when I tell you that without you, there is absolutely no way we could offer the critical services and equipment that people in seven counties count on us to provide.”

Looking forward to the year ahead, Kathleen also described the Chapter’s ambitious four-year strategic plan, developed by our Strategic Planning Committee under the leadership of Trustee and Committee Chair April Spencer, along with consultants and friends of the Chapter Mary Genis and John Whaley.

Angel Constable and Chapter Trustee Barbara Frova

“Included in these goals is a plan to identify and serve a minimum of 70% people with ALS in our service area, develop a comprehensive caregiver program, develop a transportation assistance program, institute a hospice referral program, and raise more money towards research for a cure,” Kathleen explained. “Also included is a focus on recruiting dynamic leadership for the Board, and strengthening our case management capabilities. Additionally, we plan to cultivate relationships in under-served, low-income communities…”

Fred Fisher, the Chapter’s President and CEO, recalled our many trials and triumphs in 2008, which he said, “…will be remembered as a year when the Chapter reached goals that will be felt for decades to come.” He reviewed our important legislative victories, including a “Standard of Care” law to insure all California PALS receive the same high quality of care delivered at our Cedars Sinai Center for ALS Care, and tax check-off legislation that raises money for ALS research. He also expressed how, “We grieved with families as we fondly remembered the PALS that left us in 2008. That’s the difficult part of what we do, but it pushes us even harder and makes us even more resolute in helping to make the lives of our PALS more productive and meaningful wherever and whenever we can.”

PALS Eric Lowen

Fred also announced the merging of the Greater Los Angeles Chapter of The ALS Association with the San Francisco Bay Area Chapter, expanding our operations to now encompass Southern, Central and Northern California, all headquartered in Agoura Hills.

Also providing some much-appreciated humor, Fred joked, “Ladies and Gentlemen, as wonderful as tonight will be, I’m afraid I do have some very disappointing news for you. I’m aware that many, if not all of you, come to this event year after year solely for the entertainment value of my PowerPoint presentations. And I’m sure that as you were driving here tonight, your anticipation was building as you looked forward to these highlight moments of the show.

“Well this year, I’m sorry to say, due to time considerations, I’ve been asked by the producer to leave my laptop, laser pointer, pie charts and bar graphs back at the office. However, all is not lost. Because in the packet you received as you entered the theater, you will find the latest and greatest of my bar graphs along with other useful information that you can take with you to enjoy in the comfort of your own home.”

Fred Fisher, Board Vice Chair Dave Davis, and Kathleen Rasmussen

Always an Annual Meeting highlight is the presenting of the Chapter’s awards. The 2009 Spotlight Award for the person or organization who has done the most to publicize our activities was given to The Ventura County Star newspaper, which has provided significant coverage of the Chapter’s events in Ventura County, as well as in-depth articles informing its readers about ALS and the Chapter’s ability to help PALS. “So it’s no coincidence that we’re currently serving 80% of people in Ventura County who have ALS,” said Fred Fisher, “…the highest percentage of PALS served in any of our seven counties.” The award was accepted by the paper’s Assistant Managing Editor, DeAnn Justesen.

The 2009 Volunteer of the Year Award was presented by last year’s winner and Board Member Stacy Inman. The Award was given to Board Vice Chair Dave Davis, who is also Chair of the Development Committee, and for the last three years has Chaired the Chapter’s annual Golf Tournament. Stacy described Dave Davis as, “…someone who epitomizes the dedication and spirit of a volunteer. He has been an outstanding leader in our Chapter.

Chapter Director of Special Events Giovanna D’Angelo and PALS Edith Aurora Hughes Gonzales

The Corporate Philanthropist Award for 2009 was given to Natural Balance Pet Foods, whose owner and principle partner, Joey Herrick, embraced the principles of charitable giving by first bringing the company into the Chapter’s family in 2006 as the strike-out sponsor for our CytRx Strike Out Lou Gehrig’s Disease All Start Invitational Baseball Tournament. Receiving the award for Natural Balance Pet Foods was its principle member and spokesperson, Jimmy Van Patten.

The Commitment to a Cure Award was presented by Kathleen Rasmussen, who reviewed some of the research advancements we saw last year, including the creation of stem cell motor neurons from skin cells of ALS patients, which was recognized by Time Magazine as the top medical breakthrough of 2008. The 2009 Commitment to a Cure Award was given to the Michael J. Yost Memorial ALS Stem Cell Research Fund in recognition of its dedication to finding new treatments and a cure for Lou Gehrig’s disease. Michael Yost battled ALS for 15 years before the fund was created at his bequest upon his death in 2005 to further research into the use of stem cells. The award was accepted by his brother, Stephen Yost.

Deborah Taubman of the H.P. and Sophia Taubman Family Foundation, the 2008 Philanthropist of the Year Award recipient, presented the 2009 Philanthropist of the Year Award to the Tuffli Family Foundation for its considerable support of the Chapter since 1997. The Award was accepted by the president of the Tuffli Family Foundation, Don Tuffli, and his wife Martha Tuffli, who serves as the Foundation’s vice president. 

Susan and Stephen Yost

In honor of the 70th year anniversary this summer of Lou Gehrig’s famous speech in which he referred to himself as, “the luckiest man on face of the earth,” a speech that gave most Americans their first exposure to ALS, a video was also shown about Gehrig’s remarkable life, his courage, humility and humanity, which have inspired countless people around the world.

The video also served to introduce the final award presented at the Annual Meeting, the Iron Horse Award, named in honor of Lou Gehrig, which was given this year to musician Eric Lowen, who embodies the indomitable spirit of all those who keep fighting, and creating, and living their lives despite the physical challenges imposed by ALS.

A short film was then shown documenting the recording of a song Eric Lowen wrote entitled “Learning to Fall.” In the film, which was recorded last year in Southern California, Eric and his musical partner Dan Navarro, who is also an Advisory Trustee with the Chapter, are accompanied by other musicians and a chorus of people whose lives have been touched by ALS. After the film, Eric Lowen demonstrated his legendary humor and spirit by leading the audience in a rousing cheer of “ALS sucks!”

Roger Spencer, Angela Constable, Chuck Stockham, and April Spencer

“Six PALS,” a film by director Rich Dahl, was also shown at the Annual Meeting. The film showcased a series of moving portraits of people who are now battling Lou Gehrig’s disease. The personality, fearlessness, and grace of those profiled in the film, the losses they experience when impaired by ALS, and the emotion we all shared hearing their stories left many in the audience unable to contain their tears.

A slide presentation also paid tribute to PALS we have lost over the years, remembering some of the people we have had the privilege of knowing, who will remain our hearts and as a part of our Chapter’s family forever.

The Annual Meeting’s many speakers and presentations helped express what we in the audience were all feeling: our deepest gratitude for the precious gifts of help, hope, and love our supporters give ALS patients every day of the year.

click here to see director Rich Dahl’s film "Six Pals"

click here to watch a video of the recording of Lowen & Navarro’s "Learning To Fall"

click here to go to the Chapter's ongoing image archive to see more photos of the 2009 Annual Meeting