Letter from the Executive Director
Step Up to the Plate and Meet the Match
Nearly 74 years ago, Major League Baseball Hall of Fame legend Lou Gehrig stood before his legions of fans at Yankee Stadium and declared himself the luckiest man alive. His public battle with the disease that now bears his name was thrust into the national spotlight for the first time that day.
During the month of July, The ALS Association is teaming up with Major League Baseball for the 4th annual ALS Awareness initiative, a campaign to rally support in the fight against Lou Gehrig’s Disease. Baseball clubs across the country are uniting throughout the season to bring public attention to ALS.
Want to join the team? You can by participating in the Covering All the Bases Hitting Challenge and making a pledge that will support our care services programs, cutting-edge research, and advance public policy efforts on Capitol Hill.
One of our loyal and passionate supporters has stepped up to the plate by matching any new contributions to Covering All the Bases up to $25,000. By joining the team, your gift will have double the impact on the services and programs provided by The ALS Association.
Every “hit” brings us closer to a treatment and cure for Lou Gehrig’s Disease. Thank you for your continued support!
The ALS Association Tennessee Chapter
Advocacy and Public Policy
Spending Bill Increases ALS Registry Funding; Continues Funding for ALSRP
Last night, House and Senate leaders reached an agreement to fund most of the federal government through September 2015. Thanks to your outreach throughout the year, the agreement provides $7,820,000 for the National ALS Registry in FY 2015, a more than 30% increase over last year! The agreement also includes $7,500,000 in continued funding for the ALS Research Program (ALSRP) at the Department of Defense, the same level of funding as last year. Moreover, the agreement provides $30 billion for the National Institutes of Health (NIH), $150 million more than last year, and specifically supports funding for ALS research. The bill next heads to the House and Senate and will be voted on later this week. Read full story
Ask the Doc: Are There Limitations on Joining Clinical Trials?
Monthly “Question and Answer” with Dr. Kasarskis — The question this month is, “Are There Limitations on Joining Clinical Trials?” Read the full story.
We have a variety of resources to help you improve your quality of life. Please learn more about our support groups and caregiver tips to enhance your ability to deal with the physical and emotional issues associated with ALS.
To Your Door: Getting Groceries Delivered
By Barbara Bronson Gray, RN, MN
Every busy family dreams of finding a way to avoid having to go grocery shopping, week after week. But especially for those with ALS and their busy caregivers, getting to the store regularly can be a big challenge.
Over the last decade, the range of options for home grocery delivery has increased, covering more geographic areas and allowing people to order fresh food, pantry supplies, drugs and sundries, some even with same-day delivery.
Most accept online orders, and some provide additional services, like a “shop by history” system that allows you to quickly check off items and brands you typically choose. Many offer discounts if you order regularly, and others provide delivery free if you spend a certain amount on the order.
Click here to read the full article.
Research Webinars and Videos
Induced Pluripotent Stem Cells to Model and Treat ALS:
A New ALS Association Funded Core Facility at Cedars-Sinai
Speaker: Clive Svendsen, Ph.D., Cedars-Sinai Medical Center
Date: February 10, 2015
Time: 4:00 – 5:00 EDT
Access code: 827 604 829
ALS Association-Supported Study Shows Parkinson’s Disease Gene Targets Brain Motor Neurons
Loss of a gene linked to Parkinson’s disease (PD) exposes motor neurons in the brain to increased stress and leads to neurodegeneration, according to a study supported by The ALS Association. The study is published in the journal Cerebral Cortex.
Mutations in the gene, called UCHL1, were first identified as a rare cause of PD and more recently in a non-PD syndrome characterized by loss of upper motor neurons. Upper motor neurons, which link the brain and spinal cord, are also lost in ALS. To better understand the normal role of the gene, researchers developed mice lacking any UCHL1 function. They found that the absence of UCHL1 protein caused selective vulnerability of upper motor neurons. Degeneration of these neurons was accompanied by signs of stress in part of the cell’s protein quality control system, called the endoplasmic reticulum (ER), suggesting that this may contribute to development of the disease.
“These findings emphasize the importance of the ER in motor neuron health,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “While UCHL1 itself is not known to be a direct cause of ALS, exploring how it causes degeneration of the brain’s motor neurons is likely to shed light on the same process in ALS.”
The new mouse model will help unravel the molecular mechanisms of brain motor neuron vulnerability and may be useful for testing compounds to improve brain motor neuron health.
The research was performed by 2010 Milton Safenowitz fellow Javier Jara, Ph.D., and Baris Genc, Ph.D., under the direction of Hande Ozdinler, Ph.D., both of Northwestern University in Chicago, Ill.
How You Can Help
Hidden Treasure – Donating Savings Bonds to Fight ALS
It has been estimated that there are over 30 million expired savings bonds tucked away in file cabinets and safety deposit boxes all across America. They are not earning a nickel more for their owners.
When savings bonds are redeemed, tax is owed on the income received. Presently, there is no way to avoid paying that tax, except by naming a charity such as The ALS Association to receive the bonds through a bequest in your will.
Some of our friends choose to redeem their expired bonds and knowingly incur the tax that is owed. However, they then use the proceeds of the redemption to fund a Charitable Gift Annuity. The deduction allowed for creating the Charitable Gift Annuity helps offset the tax owed on the bond redemption. Their previously “overlooked” asset is turned into an income-producing one for the rest of their lives while also making a significant gift to the chapter to help fund compassionate care, advocacy and research in the fight against ALS.
Please contact our office for more information about donating your savings bond to our chapter or making a legacy gift.
Don’t forget to add our upcoming events to your calendar!
Planning a fundraising or awareness event? Call 615-331-5556 to have it included in the next newsletter.
Are you interested in helping us plan one of our events? If you would like to join the committee for one of our Walks or golf tournaments, call 615-331-5556!
We at the ALS Association TN Chapter are here to serve you. We are in the process of surveying our PALS & CALS about what services they would like to see us offer. If you have a suggestion please contact Patty Lane firstname.lastname@example.org. If you would like to see a support group in your area please let us know where and we will explore the possibility based on clients that we know in the area. Below are the support groups we currently offer:
- Tri-Cities Area Support Group – 1st Tuesday of every month @ 5:30pm. Please contact Jane Luethke at (423) 224-2357 or email@example.com.
- Knoxville Area Support Group – 3rd Tuesday of every month @ 6:30pm. Please contact Jane Luethke at (423) 224-2357 or firstname.lastname@example.org.
- Chattanooga Area Support Group – 2nd Monday of every month @ 5:00pm. Please contact Patty Lane at (615) 331-5556 or email@example.com.
- Nashville Area Caregiver Support Group – 3rd Thursday of every month @ 12-1:30pm. Please contact Patty Lane at (615) 331-5556 or firstname.lastname@example.org.
- West Tennessee PALS & CALS Support Group – 1st Thursday of every month @ 6:30pm. Please contact Beth Bumgardner at (901) 854-8661 or email@example.com
- West Tennessee Caregiver Support Group – 3rd Thursday of every month @ 6:30pm. Please contact Beth Bumgardner at (901) 854-8661 or firstname.lastname@example.org