Welcome to the Kentucky ALS Chapter Highlights
The world around us is rapidly changing, and some activities have stopped. ALS doesn’t stop, and neither can we. The Kentucky Chapter holds four walks to raise awareness about ALS and funds for our Care Services Department. We provide resources and services to patients throughout the state – free of charge. Our Durable Medical Equipment Loan Closet also gets replenished with new and pre-owned equipment thanks to our fundraisers and generous donors. The chapter was recently a recipient of several grants – from Delta Dental Foundation and the Wood and Marie Hannah Foundation. “We thank them for their support of our mission and ongoing generosity to make our community a better place.”
The 2020 Walks to Defeat ALS
While the Kentucky Walks to Defeat ALS looked different this year, it did not keep Teams from raising funds and awareness for the ALS Mission. Teams gathered at local parks and neighborhoods, created signs, wore team shirts, played games, and shared stories of why they Walk to Defeat ALS. It was incredible to see so many people Walk Their Way for a cause so important.
Thank you to everyone that supported ALS this year during these unprecedented times. It will definitely be one to remember!
Save The Date: The Walk to Defeat ALS Awards Ceremony and Feedback For Good. Feedback for Good will start late November and run for 5 weeks and the Awards Ceremony will take place early December. More information to come!
A BIG Thank You to all of the 2020 Walk Participants!
Your fundraising efforts allow us to continue to provide services, support and work toward finding a cure for ALS. The fundraising centers will be open until the end of the year. Thank you for keeping up the great work!
A Note From Care Services
November is National Family Caregivers Month!
FACTS ABOUT CAREGIVERS
Caregivers say it is difficult to take care of their own health
Caregivers report high physical strain as a result of their caregiving duties
Caregivers consider their caregiving situation to be highly stressful
Caregivers feel their role as a caregiver gives them a sense of purpose or meaning in life
The results from a 2020 Report on Caregiving in the U.S. conducted by the National Alliance for Caregiving found that:
28% of caregivers have stopped saving money 22% have used up their personal short-term savings
12% have used long-term savings
November is a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. Your Kentuck Chapter is here to support you. Please contact your Care Coordinator for assistance.
VETERAN'S DAY (11/11)
On Veteran’s Day, we celebrate the service of our nation’s heroes, military veterans who have served in the U.S. Armed Forces. As you honor these incredibly courageous individuals, we ask you to remember those veterans who are fighting another battle - ALS. You can read more about the increased risk veterans face, and what programs are available to help at www.als.org.
Your Care Services team continues to support you. We are here to offer friendly and caring support, durable medical equipment, quality of life supplies, and phone or virtual visits. Please call us for assistance.
Zoom Support Groups will continue each month. In October, we featured a physician from Bluegrass Care Navigators. She discussed Caring for the Caregiver in the Time of Covid.
November 10 at 6pm is our next scheduled Zoom Support Group. Join us for a session on Medicare 101.
Support Your Kentucky Chapter
Express Feedback begins November 16th!
ALS KY Chapter is partnering with Express Feedback for Good™ to bring you a way to generate funds for the ALS Mission without spending a dime. Express Feedback for Good™ is a platform for people to create funding about a cause they're passionate about. Participants will spend 2-4 minutes reviewing an online product and providing feedback. The ALS Association willl receive money for each review! For you, it's an easy, free and impactful way to support the ALS community with just a few minutes of your day.
Another GREAT way to financially support your ALS Chapter is by choosing ALS the next time you shop on AmazonSmile!
1. Visit Smile.amazon.com
2. Sign in wih your amazon.com credentials
3. Choose a charitable organization to receive your donations
4. Select your charity
Use your Kroger Plus Card & help us grow!
Supporting our organization has never been easier — just shop at Kroger and scan your Plus Card!
Here’s how to enroll:
1. Visit www.kroger.com/communityreward
2. Click “Enroll Now”
3. Sign in to your online account, or create an account
4. Find and select our organization
*Organization Name: The ALS Association Kentucky Chapter
*Organization Number: PX860
- *Click “Save”
You’ll start earning rewards for our organization right away on qualifying purchases made using your Kroger Plus Card!
Learn more at www.kroger.com/communityrewards and thank you for your support.
We are closely monitoring the outbreak of the coronavirus (COVID-19) and wanted to update you on the efforts of The ALS Association Kentucky Chapter to protect the health and well-being of our clients, caregivers, families, volunteers, and employees.
We are acutely aware that people with ALS are at an increased risk for respiratory problems associated with viral infections.
Because of this risk and the care needs of many people with ALS, we are considering their primary caregivers as high risk as well. It is important for us to be increasingly cautious as a result. Out of this caution, we have decided to pause our monthly, in-person support groups across the state for now.
The ALS Association Kentucky Chapter promotes everyday preventive health actions to all our clients, caregivers, families, volunteers and staff, in accordance with the Centers for Disease Control (CDC) and the state Department of Public Health (DPH) guidelines.
Wash your hands often with soap and water for 20 seconds. If soap and water are not available, use an alcohol-based hand sanitizer.
Avoid touching your eyes, nose, and mouth with unwashed hands.
Avoid close contact with people who are ill.
Stay home when you are ill.
Practice good respiratory etiquette and cover your mouth and nose when coughing or sneezing.
If using a tissue, immediately throw the tissue in the garbage and wash your hands.
If you don’t have a tissue, sneeze or cough into your sleeve or arm.
Some quick resource information gleaned from the ARCH program-link
Important ALS Info
Based on positive phase 2 clinical trial outcomes showing safety and effectiveness at slowing disease progression, #AMX3500 should come to the market without delay.
Read about why in our blog post
To access and sign the petition, visit www.als.org/petition
Kentucky Chapter Staff
You can be assured that the work of our chapter will go on. That’s because our community is made up of people like you, who are committed to the ALS Association’s mission.
ALS is relentless; it doesn’t stop for COVID-19. The impact of ALS continues to be felt by those in our community every day. We won’t let COVID-19 prevent us from assisting families or stop our fight against this disease.
Memories from the Lexington Walk
Memories from the Western KY Walk
* Watch a fantastic Chapter Support video by Mark Riggins (Western KY Walk).
click here for video!
Memories from the Northern KY Walk
Memories from the Louisville Walk
If you have any questions about participating in any Walk, holding a fundraiser, or volunteering opportunities please contact:
Daly Muller at 502-495-3687 or email@example.com
Or register here
Kentucky Chapter Care Services
Due to Covid19 restrictions, our Monthly Support Groups are being offerred in the Zoom Meeting format. If you would like to be added to the invitation email list, please contact Patricia Peak at firstname.lastname@example.org
These are our Support Group locations when we return to in-person meetings:
Northern Kentucky Area
2nd Tuesday of the Month-6pm-7:30pm
St. Elizabeth Hospital-Florence
Main Entrance Atrium Conference Room
4900 Houston Road
Western KY Area
2nd Thursday of the Month-6pm-7:30pm
Murray Calloway County Hospital
Hospital Board Room
803 Poplar Street
3rd Tuesday of the Month-6pm-7:30pm
Cardinal Hill Rehab Hospital
Center of Learning Wing
2050 Versailles Road
4th Tuesday of the Month-6pm-7:30pm
At KY Chapter Office
13102 Eastpoint Park Boulevard Suite #101
Please keep in mind that dates, times, and locations can change. For more information please contact:
Patricia Peak - 502-495-3672
Bereavement Support & Programs
The Kentucky Chapter offers support for those who have lost a loved one to ALS. If you are a former Caregiver, Family Member, Friend, etc., and are seeking support in dealing with your loss, we encourage you to attend our group meetings.
Kentucky ALS Clinics and Treatment Centers
University of Kentucky ALS Certified Multidisciplinary Clinic
Dr. Edward Kasarskis, Medical Director-Kentucky Neuroscience Institute-1st floor of Kentucky Clinic
740 South Limestone Street, J-401 Lexington, Kentucky 40536-0284
Patient Services Coordinator-Brittany Ledford (859)218-5061
Clinical Research Nurse- Meghann Bruno, RN (859)218-5064
Fax:(859)257-5477 or Fax:(859)257-8990/E-mail: Meghann.email@example.com
University of Louisville Physicians Recognized ALS Multidisciplinary Clinic @ Frazier Rehab
Meets on Friday twice a month
Dr. Martin Brown, Medical Director-Frazier Rehab Hospital-6th Floor
220 Abraham Flexner Way Louisville KY, 40202
Johanna Harris, RN, BSN, ALS Clinic Coordinator
Phone:(502)588-4829 or Fax:(502)589-0805/Email: firstname.lastname@example.org
Norton Neuroscience Institute ALS Clinic
Meets the 3rd Wednesday of the month
Dr. Mark Bazant, Medical Director-Norton Cancer Institute
676 South Floyd Street 2nd Floor Louisville, Kentucky 40202
Phone:(502)899-6782 or Fax:(502)899-6783
Lexington VA-Multidisciplinary ALS Clinic
Dr. Edward Kasarskis, Medical Director-Cooper Division
1101 Veterans Drive Lexington, KY 40502
Donna Hardiman, Case Manager
Louisville VA-Multidisciplinary ALS Clinic
Dr. David Haustein, Medical Director, Vickie Dearmond, Nurse Practitioner/Robley Rex VA Medical Center
800 Zorn Ave Louisville, KY 40206
Carol Scott, LCSW
Dr Bazant at the Norton ALS Clinic
The ALS Certified Treatment Center at University of Kentucky
The ALS Recognized Treatment Center at University of Louisville
Current ALS Research Studies at the University of Kentucky
Clinical Drug Studies:
*Please feel free to call at any time regarding ALS Clinical Trials or Contacts*
Our partnership with Heaven Hill Distilleries is vital to our mission and fight against ALS. Each year Heaven Hill donates a part of the proceeds from the annual Parker’s Heritage Collection whiskey to fight Amyotrophic Lateral Sclerosis, better known as “Lou Gehrig’s Disease.” The Bardstown, Kentucky-based distiller releases these special bottles every September, with $10 from each bottle to be donated to the ALS Association’s “Parker’s Promise of Hope Fund.”
“Parker Beam Promise of Hope”
The nation's largest gathering of ALS advocates is going virtual! The 2020 National ALS Vitural Advocacy Conference brought together ALS advocates from across the country to learn about the latest in ALS research, care services and advocacy and engage with Congress on policy priorities that will improve the lives of people with ALS.
Not to be deterred by the COVID-19 pandemic, ALS Association advocates from across the country held more than 350 virtual meetings with members of Congress Tuesday, adapting the Association’s longstanding annual Advocacy Conference to ensure the safety of participants.
Historically, upwards of 600 ALS advocates gather in the nation’s capital for days of face-to-face meetings with their elected representatives in the Congress and the Senate.
“COVID-19 makes our policy priorities all the more relevant,” said Kathleen Sheehan, vice president of public policy at The ALS Association.
“The pandemic exacerbates the financial, emotional and clinical needs of the ALS community and it was imperative to let legislators know that, even if it meant modifying our conference to a new platform.”
Register Here. There is no fee to attend, but registration is required.
ALS advocates lead the fight to defeat ALS on the frontlines.
Join us today to inform your lawmakers about issues that affect people living with ALS and their families.
The ALS Advocacy Conference goes VIRTUAL!
For more information click the link!
$1 Dollar Difference fund.
-Dine to Donate
-Hop, Bowk, Swim, and Skate A-Thons
-Golf/Mini Golf Tournament
-5K or Marathon
-Corn Hole Tournament