February 2009, Issue 12
Thanks to your continued support, LBDA celebrated our 5-year anniversary last summer as a publicly supported charity. And because of your help, we were able to make some monumental strides this year serving LBD families, people with LBD, and the medical professionals who care for them. Here are some of the exciting ways your generous donations were Increasing Knowledge, Sharing Experience and Building Hope in 2008.
Together with you, we served those with LBD by:
Publishing “An Introduction to LBD” — the first publication written especially for the person newly diagnosed with LBD.
While continuing to serve even more people with LBD and their families through education and outreach, we are also excited to announce two new initiatives underway for the medical and scientific community:
- Physician Outreach Initiative
- Biomarkers in Lewy Body Disease — LBDA’s First Scientific Conference
LBDA reached new heights in 2008 through your generosity. Your support helped raise nearly $400,000 for programs that serve families affected by Lewy body dementias during 2008 — that’s a 52% increase in financial support from 2007! For those of you who took part in the 2nd Annual Friends asking Friends Campaign, honored someone close to you through a gift, or supported the cause in any way, Thank You!
Nearly 1,000 caregivers responded to our LBD Caregiver Burden Assessment Survey last year, and members of LBDA’s Scientific Advisory Council have begun delivering that data to the medical community.
James E. Galvin, MD, MPH, John E. Duda, MD, Daniel Kaufer, MD, Carol F. Lippa, MD, Steven H. Zarit, PhD, and the Lewy Body Dementia Association have submitted abstracts on the survey to several major national and international conferences. In October of 2008, Dr. John Duda gave a presentation on LBDA’s behalf at the 6th International Congress on Mental Dysfunctions & Other Non-Motor Features in Parkinson’s Disease, in Dresden Germany, to neurologists, psychiatrists, geriatricians, neuropsychologists, and scientists.
By Lyn Roche
A caregiver sent me the following letter during the Christmas holidays about her family’s resistance to changing their traditional holiday gathering. Although the season is past, I want to share the letter and her solution with you because it can apply to other holidays, birthdays, and special occasions all during the year.
Dear Lyn: My husband has had dementia for about eight years now. Each year I’ve had to change some of our holiday traditions. I’m OK with this, but sometimes members of our family put a “guilt trip“ on me because we don’t participate in lavish festivities like we’ve done in the past.
By Dorie Jordan
My story begins around 1999, when I began to realize through many doctor visits that I had all the symptoms of early onset Parkinson‘s disease. Around the same time, my husband Larry began the same search for what was wrong with him, and we found out in 2000 that I had Parkinson’s and eventually that he had Lewy body disease. Only 55 and 58 now, and there we were eight years ago at 47 and 50 with these horrible illnesses. Larry is now in a nursing facility and has been receiving excellent care, but it has been extremely hard dealing with the strain of seeing him gradually progress downhill, now to the point of my not being able to understand most of his speech. To those of you who are beginning on this road, let me say that the most important thing is to focus on the positive and not worry at all of the little things. I would give everything and anything to have my husband back to even the point he was at a year ago. Cherish every moment!
You can read other LBD stories online by clicking the following links:
If you have an LBD story to share, click here to email it to LBDA and let us share it with our readers!
LBDA’s Board of Directors is comprised of both individuals whose lives have been touched by LBD and professionals with a deep dedication to our mission. We are deeply grateful to the following individuals for their volunteer leadership of LBDA’s mission:
John L. Young, President
Joe Whiteis, President-Elect
Jim Whitworth, Treasurer/Secretary
James Galvin, MD
Debbie McCoy Massey
Steve Stevenson, CPA
Introducing Carol Caughran, MS
Joining the Board this year is Carol Caughran, MS. Carol was the 2006 LBDA Volunteer of the Year after launching the very first LBDA caregiver support group in the U.S. She has since coordinated two community symposiums on LBD. Carol’s father passed away from LBD in 2005, and Carol now lives in Jacksonville, FL, where she is self-employed, is a master’s level counselor, and volunteers with both the Mayo Clinic and Hospice as a speaker on caregiver education topics.
The Lewy Body Dementia Association is extremely pleased to announce that Angela Taylor is transitioning from her significant role on the Board of Directors to an equally meaningful staff role. Angela brings a unique collection of experience and knowledge to her new position.