2013_04_26_A_Wonderful_Night_To_Defeat_ALS

An Evening to Conquer ALS at the “All That Jazz” Gala Celebration!

Kay Thomas (center), a veteran who has been living with ALS since 2000, surrounded by (from left to right)
her daughter Kirsten, her husband Philip, and her care manager Kim Venezia with her partner Chinabear

April 26, 2013 –San Francisco

2013 All that Jazz- Gala-the four seasons

It was a truly wonderful evening dedicated to conquering ALS as The ALS Association Golden West Chapter hosted it's “All That Jazz” Gala Celebration. This premiere event was filled with live jazz music by the Fil Lorenz Quintet and gourmet dinner at the Four Seasons Hotel in San Francisco. Chapter supporters from all over the country turned out in their "black tie" finest to raise funds and celebrate two people who have made a tremendous impact to the ALS community with the Chapter's annual Essey Award presentation.

The dedicated Gala committee comprised of Naoko Dalla Valle, Pat Dodson, Peggie Fenstermacher, Lyle Hayden, Ursula Hermacinski, Judy Johnson, and Sue Morris left no detail unfulfilled- from the beautiful flowers to the unique jazz-inspired decorations. The committee was able to gather hundreds of rare and one-of-a-kind items for the event's silent and live auctions, which included rare French and California wines, exotic getaways to locations like Costa Rica and Australia, and unique opportunities like a tour of Space X, a private company where rockets are designed and launched and no public tours are ever available. Even the evening's master of ceremonies, Brian Dietzen from NCIS, arranged a special VIP visit to the set of the #1 CBS television show. Their commitment and effort yielded one of the most successful auctions in the Golden West Chapter's history.

Dietzen opened the evening's entertainment by sharing with the audience the parallels between jazz and emerging research. "At first glance, they seem miles apart," Dietzen said. "Each researcher, like a composer, is pursuing combinations that will bring them to a masterpiece that will one day bring a world of treatments and a cure for ALS."

After welcome remarks from the Golden West Chapter's President and CEO, Fred Fisher, the audience was presented with the world premiere of a poignant new public awareness film- The ALS Nation. Featuring the voices of many different people within the ALS community, the focus was on a unified commitment from all to work together to find a cure.

The Essey Awards are the Chapter’s highest honor, named for one of the founding members of the Greater Bay Area Chapter, Richard Essey, and are presented to esteemed members of the community for outstanding efforts in the areas of ALS research, philanthropy and public awareness.

This year, the Commitment to a Cure Award was presented to the Gladstone Institutes’ Shinya Yamanaka, MD, PhD, 2012 Nobel Prize Winner in Physiology or Medicine. Dr. Yamanaka won the prize for his important discovery of transforming adult skin cells into embryonic-like stem cells—opening new prospects for drug discovery, personalized medicine and tissue regeneration.You can view the video presentation about Dr. Yamanaka on our You Tube Channel.

Dr. Yamanaka was unable to receive his award in person, but fellow Gladstone Institutes senior investigator and associate director, Steven Finkbeiner MD, PhD accepted it in his absence."Dr. Yamanaka's work is helping to lead the way for many scientists to make significant process in ALS research. It is truly an exciting time."

The Lifetime Achievement Award was presented to Diane Winokur, for her personal and professional achievements in advancing the landscape of ALS research, along with enhancing the quality of care for those suffering from the disease. You can view the video about Diane on our You Tube Channel.

The award presentation was led by chapter board chair, Cameron Ward, who said, "For over two decades, Diane has been a tireless champion both nationally and internationally in the fight against ALS. Her story is one of strength, compassion, and determination"

The remarks continued with Andy Winokur, Diane's son, who offered some special thoughts about his mother and his family's battle with ALS, having lost his two brothers Douglas and Hugh to the disease.

Andy Winokur

"Mom, seldom, if ever, has an award such as this gone to someone as deserving as you are. Please know that I love you deeply and am so grateful and appreciative of all that you have done for me. I am so proud of you, and what you have achieved….and under what excruciating circumstances. If Ernest Hemingway was right, and courage is grace under pressure, then surely you are the most courageous person I have ever known.

I also want to say thank you to everyone in the ALS community -- doctors, researchers, clinicians, patients, families of patients -- for you have done for my mom as much as she has done for you. You provided a productive outlet through which my mom could exercise her considerable and understandable frustration, anger, anguish, and pain. Without that, I am not sure my mom would have made it through the incalculable losses that this despicable disease has wrought upon her and our family.

I want to say that my mom is the ideal person to have in your corner, but really that is an inadequate analogy. The phrase comes from boxing matches when, between rounds, the corner man puts the fighter back together and provides smelling salts so he can go fight another round. When the bell rings, and the next round begins, the corner man leaves the ring. My mom would never leave the ring. On the contrary, she would team up with the fighter and brawl back against whoever was hurting him. My mom doesn't sit on the sidelines and watch. She never has. She fires herself up and, disregarding any personal risks, jumps right into the middle of the action. That is what makes her so effective… and so beloved. Anyone who knows my mom knows that, in the crunch, she will stand side by their side, roll up her sleeves up, and fight like hell.

Thank you for recognizing and honoring my mom’s accomplishments this evening. While I can’t think of anyone more deserving, please don't think that just because this is an award for 'lifetime achievement' that she is done fighting. She will never stop fighting until this miserable disease is relegated to the dustbins of history. And with your help, we will make that day come sooner rather than later."

The presentation continued with Dr. Jeffrey Rothstein, Director of the Robert Packard Center for ALS Research at Johns Hopkins and with Jane Gilbert, President & CEO, The ALS Association. Both shared their praise for Diane's commitment and accomplishments for the ALS community, and presented the audience with information about the launch of the Winokur Family Research Initiative, an exciting new partnership between the two organizations to fund promising early stage ALS research.

It was Diane herself who captured the spirit of the evening and the Winokur Family Research Initiative in her remarks.

Diane Winokur

"This is truly a Gala evening in every sense of the word, and I am so grateful to everyone who made this event possible. At the end of February I had the pleasure of visiting Johns Hopkins for the Packard Center’s annual research symposium, and I got to hear grantees deliver reports on their current work. New technologies were being employed and projects were incorporating new disciplines. There was collaboration across institutions, state lines and international borders. Emerging research was building on past achievements and using knowledge about other illnesses that could lead to a clearer understanding of ALS. These scientists were thinking out of the box.

The Winokur Family Research Initiative is an expression of that hope and is designed specifically to foster new and creative thinking. It encourages and funds early-stage research projects – the kind of research that typically has a tough time finding financial support through traditional channels. It also puts green-light authority directly in the hands of two remarkable institutions that I respect a great deal, The ALS Association and the Robert Packard Center for ALS Research at Johns Hopkins. This will allow us to avoid the usual red tape and bureaucracy often associated with research funding. Your support of this initiative ensures that our most promising scientists can continue to do the work that can lead to breakthroughs and, eventually, to a cure.

A scientist friend of mine once described “hope” as something unique and indefinable – one either has it or does not. The current state of ALS research gives me hope in great abundance, but we can’t stop now. My wish for all of you is to have hope as well because I know that with our collective vision and resources, we will conquer ALS. Thank you for this award, for your presence and support and, above all, for your friendship "

You can view more photos from the even on our flickr page, as well as videos on our You Tube Channel. If you would like to make a gift in honor of Dr. Yamanaka's and Diane Winokur's achievements, please visit: http://bit.ly/2013AllthatJazzGala