Thursday, May 19, 2011

Making a Breakthrough for Alzheimer’s

Alzheimer’s Research Scientist and Professor Dr. Bruce Lamb was instrumental in garnering national attention to the need for funding and Congressional support for Alzheimer’s disease research. Last year, Dr. Lamb dreamed-up and spearheaded the Alzheimer’s Breakthrough Ride: a cross-country bicycle ride that raised awareness and culminated in a movement on Capitol Hill on Sept. 21, World Alzheimer’s Day. Thanks in part to his efforts, Congress passed the National Alzheimer’s Project Act (NAPA). This will be critical to advancing our efforts in research.

We honored Dr. Lamb at A Celebration of Hope, on Thursday, May 5, with the Community Service Award. Below, we share comments from Dr. Lamb on receiving the award.


FROM DR. BRUCE LAMB, PHD

This has been an amazing year for Alzheimer’s researchers from across the country! Not only because we are continuing to make strides towards a world without Alzheimer’s disease in the laboratory, but this year for the first time, researchers engaged in advocacy, riding their bikes over 4,500 miles across the United States in the Alzheimer’s Breakthrough Ride to garner petition signatures in support of Alzheimer’s legislation. Notably, the Breakthrough Ride helped lead to the passage of the first piece of federal legislation focused on Alzheimer’s disease, called the National Alzheimer’s Project Act –or NAPA- earlier this year. NAPA will develop a national office for dealing with Alzheimer’s disease and as such is a critical first step in the federal fight against this deadly disease.

I would like to take this opportunity to thank the contribution of the entire Alzheimer’s Breakthrough Ride Family, as we became known. This family includes the riders, who left their own families and jobs to train and ride their bikes for hours and days at a time often in extreme conditions. Some of the riders are in attendance tonight.

This family also includes the Alzheimer’s Association, who enthusiastically supported the concept of the ride from the very beginning. In particular, Nancy Udelson and the local Alzheimer’s Association Chapter provided an unbelievable reception for the ride in Cleveland last September. The Alzheimer’s Breakthrough Ride was born in Cleveland and it is certainly no coincidence that we reached our goal of 100,000 petition signatures the day the ride passed through the city!

Finally, the Breakthrough Ride family included my own wife, Samia, and my son, Raza, who rode over 300 miles of the route and my daughter Noura, who helped me train on our tandem bike.

I am proud that the Alzheimer’s Breakthrough Ride played a part in the passage of NAPA. However, NAPA does not include increased funding for Alzheimer’s research. Given the scope of the Alzheimer’s disease epidemic our country is facing, this is, simply put, unacceptable.

That’s why I need you to help me with a call and response that we used throughout the ride. When I say “Break,” I need you to say “Through.” Are you ready? What we really need in Alzheimer’s disease research is a Break…Through…Break… Through….Break….Through… Thank you very much!

Tuesday, May 17, 2011

Taking the Message into the Community

Mary Pat Sullivan has been the Speakers Bureau Coordinator at the Cleveland Area Chapter of the Alzheimer’s Association since July 2008. In this volunteer position, she revitalized our Speakers Bureau, providing outreach throughout our service area and training approximately 40 volunteers.
Mary Pat was honored at A Celebration of Hope, on Thursday, May 5, with the Volunteer Service Award. Below, we share comments from Mary Pat on receiving the award.


FROM MARY PAT SULLIVAN
I feel very honored to be given this prestigious award. I’m sure I’m like most volunteers --- doing volunteer work is simply my way of giving back for all the blessings in my life. I certainly wasn’t expecting an award, which makes it even more special. So, thank you to all of you who made that decision.

But the people I’d really like to thank are the 35 volunteers who are currently active with the Alzheimer’s Association Speakers Bureau. They are the ones I call at all hours of the day and evening, asking them to agree to yet another speaking event. They are the ones that agree to speak at meetings that range from 7:30 in the morning until 8:30 at night.

They are the ones that overcome the jitters of getting up in front of audiences that range from a handful to over 170 people. They are the ones who have given over 116 talks to the community in the last 3 years, and never missed one in all that time. If it weren’t for all of them, my job would not be award-winning.

Thursday, May 12, 2011

Our Champions

At A Celebration of Hope, on Thursday, May 5, the Alzheimer’s Association Cleveland Area Chapter recognized several wonderful individuals who work tirelessly to advance the cause. This year we honored Nancy and David Hooker with the Champion Award for their long-standing and exemplary commitment to the mission and vision.

Here, we share their comments upon receiving the award. We hope it serves to inspire.

FROM NANCY HOOKER
Thanks to our family members and friends for turning out to support us. And, I want to publicly acknowledge how proud I am of my husband whose service to the civic, cultural and charitable institutions in our city is simply exemplary.

Being recognized as a Champion is so meaningful to me because Alzheimer’s is a subject that is important personally. My efforts on behalf of the Association are inspired by two women I loved: Kathyrn Scheafer, my grandmother, and Betty Hall, my mother. Both were active, clever women with puckish senses of humor whose lives were altered by Alzheimer’s disease. In their memory, I ask you to embrace three things.

First, never stop hoping that the Alzheimer’s Association’s vision of a world without Alzheimer’s is possible. More than at any other time, there is truly a reason for optimism. The prospects for developing treatments has never looked brighter.

But, if we are to take the next steps, we must never stop advocating for the commitment of resources for research. The funding required necessitates governmental support. In this time of deficit reduction, it is essential that we speak strongly and collectively that funding research for Alzheimer’s disease should be a priority. The Alzheimer’s Association website makes it very easy for any individual to become an advocate and to join with others to signal legislators that this is an issue of importance. If just one person at each table here tonight would go to www.alz.org and register as an advocate, it would be a first step in preventing a tragic injustice if funding becomes constrained just when the science is accelerating.

And the last thing I ask is directed to those who are caring for someone affected by dementia. Never stop communicating with that person, no matter how futile it may seem, because occasionally magic happens. That was my own experience. My mother had long since lost much of her communication ability when her Alzheimer’s progressed to its final stages. There were so many things I had waited to tell her and I feared it was too late. But I said them anyhow, mostly for my own peace of mind and not because I felt she would understand.

I thanked her for being a wonderful role model and teacher and told her that every day I did something “the Betty Hall way”. And to my great delight, she responded “You’re welcome.” I pressed on and told her so many other things and my mother responded with three words that were priceless to me. She said “You’ll be fine.” In that simple sentence the decade of her disease fell away and she was restored to being my mother again, offering me comfort and reassurance. I don’t want anyone to miss a similar opportunity, so keep trying.

Never stop communicating, never stop advocating and never stop hoping.
Thank you very much.

FROM DAVID HOOKER
I would like to thank the Alzheimer's Association and its board of trustees for selecting Nancy and me as tonight's honorees. We are grateful to you for this honor.

On behalf of both of us, I want to give special thanks to those who have made this evening a success. We are grateful to all of the corporate sponsors, and in particular we thank our friends at ---Forest City--- Nancy's former colleagues and our friends at Jones Day--- and my partners and colleagues at Thompson Hine—for their leadership gifts. As for me, I could not do what I do in this community without the aid and support of my firm, and I share this recognition this evening with my partners at Thompson Hine. Also I want to thank Marc Byrnes, Alan Rosskamm and Tom Stevens for their leadership; thanks to the work of those three and the corporate committee, we have achieved a great result for the Alzheimer's Association.

At moments like these, I am sure you feel the same appreciation for our community as I do. Whether it is for United Way, where I had experience last year, for the Alzheimer's Association, or for other important causes, time and time again the people in Cleveland and Northeast Ohio demonstrate, through their individual and corporate philanthropy, their concern about those in need. It is extraordinary.

Tonight we support the Alzheimer's Association. Our family, like many of yours, has experienced the challenge of dealing with this disease. But I want to thank all of you. Your presence shows your concern for those with Alzheimer's and your support for those who provide care to those who suffer from it. I hope that you take away a renewed appreciation for what the Association does to help those who face this disease.

Between us, the real champion for The Alzheimer's Association is Nancy. My contributions to the Alzheimer's Association and to our community all start with the wonderful support I have from my wife Nancy. I could not do it without her.

Thank you very much.