ALS Ice Bucket Challenge Progress

 

Welcome to the Kentucky ALS Chapter Highlights

 

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November is National Family Caregivers' Month
 
“Each time you choose to handle someone with care, you make a significant difference in the world. Applaud yourself for having the love, strength, and courage to care!” - Caregiver Therapy

In this month of Thanksgiving, we are thankful for all you do!


A Letter From Our Executive Director

Grants for the Chapter
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.” 
- Helen Overfield, Executive Director of the Kentucky Chapter.
 

News From Our Event Staff
 

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!


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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. 

 

 
  *ALS CAN'T WAIT*
Click the link to watch this powerful video- link

 
 Available at www.butlerbooks.com
Proceeds go to ALS patients and research!  

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 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!

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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.

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Your Kentucky Team is Keeping You Safe
We Stay at Home and Work Remotely for ALS!
 
 
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Be on the lookout for learning opportunites like: Zoom and Facebook-Live virtual events!
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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. 


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CDC Guidelines

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. 
 
 
 
 
 

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Respite Resources

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

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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.

 

Executive Director: Helen Overfield-helen@alsaky.org

 

Care Services Director: Particia Peak-patricia@alsaky.org

 

Events Manager: Daly Muller (Louisville)-daly@alsaky.org

 

Events Manager: Erin Gillespie-Hislope (Lexington)-erin@alsaky.org

  

Care Services Coordinator: Kris Hehn (Northern KY)-kris@alsaky.org

 

Care Services Coordinator: Deana Savely (Western KY)-deana@alsaky.org

 

 
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2020 Walk Details 

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To learn more visit our Facebook pages to see the full video or click here: Video

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Contac our Event Managers with questions regarding the Walks:
 
Daly Muller (Louisville) daly@alsaky.org
Erin Gillespie-Hislope (NKY) erin@alsaky.org

 Memories from the Lexington Walk

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Memories from the Western KY Walk

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 *  Watch a fantastic Chapter Support video by Mark Riggins (Western KY Walk).

 click here for video!

 

Memories from the Northern KY Walk

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Memories from the Louisville Walk

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Volunteer and Service Hour Opportunities
  

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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 daly@alsaky.org

Or register here

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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 patricia@alsaky.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
Florence, KY

Western KY Area
2nd Thursday of the Month-6pm-7:30pm
Murray Calloway County Hospital    
Hospital Board Room
803 Poplar Street
Murray, KY 

Lexington Area
3rd Tuesday of the Month-6pm-7:30pm
Cardinal Hill Rehab Hospital
Center of Learning Wing
2050 Versailles Road
Lexington, KY

Louisville Area
4th Tuesday of the Month-6pm-7:30pm
At KY Chapter Office
13102 Eastpoint Park Boulevard Suite #101

Louisville, KY

Please keep in mind that dates, times, and locations can change.  For more information please contact:

Patricia Peak - 502-495-3672
Patricia@alsaky.org 877-916-6045

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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. 

 

 
 

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Kentucky ALS Clinics and Treatment Centers

Locations:

University of Kentucky ALS Certified Multidisciplinary Clinic

Meets Weekly

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.bruno@uky.edu

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: fightals@louisville.edu

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

Phone:(859)233-4511 

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

Phone: 502-287-6204

 

Updated:

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

Please contact Patricia Peak at 502-495-3686 or patricia@alsaky.org for more information.
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Current ALS Research Studies at the University of Kentucky

Clinical Drug Studies:

·        The PENNANT Study sponsored by Mallinckrodt Pharmaceuticals – In this Phase II study, we are asking individuals with ALS to administer a corticosteroid subcutaneously (injection under the skin). This is another study where the goal is to see whether or not this investigational drug can help slow down ALS progression. We are currently ENROLLING for this study.
 
·        TRANSLATE – Only open to individuals who have a known mutation in the FUS gene and ALS and/or their family members. In this study, we are looking to see whether or not the administration of an intramuscular injection of betamethasone can help reduce oxidative stress. We are currently ENROLLING for this study. 
  
·        TAME sponsored by University of Kansas –In this Phase IIB study, we are looking at how effective the study drug (memantine) is in slowing down ALS progression and preserving surviving brain cells responsible for voluntary muscle movement. We are NOT yet enrolling, but will be enrolling in Summer/Fall of 2019.

Investigator-Initiated Studies:
·        DNA Banking and FUS Gene Research – Patients and their family members who are identified to be likely to have a specific genetic mutation may offer blood samples and/or skin biopsy samples for Dr. Kasarskis and his research team to study to learn more about the way that genetic mutation causes disease. The ultimate goal would be to determine a way to turn off the genetic mutation that causes disease; and/or to prevent the development of the disease when someone gets the genetic mutation. 
 
·        Sialorrhea (drooling) Study with Radiation Medicine – Dr. Kasarskis and his research team are evaluating the effectiveness of Electron Beam Radiation in decreasing saliva production to improve the troublesome symptom of Sialorrhea, or excessive Saliva, in patients with ALS and other debilitating neurological disorders. 
 
·        Residential Survey of ALS Patients living in KY, OH, WV, TN, and IN – Dr. Kasarskis and his research team are looking for environmental factors that are associated with an increased risk for developing ALS. Willing participants are asked to complete a survey that includes their lifelong residential and occupational history (every place they have lived, and their occupation while they lived there.) This study is open to all ALS patients 
 
·        AWARE Quality of Life Study – Dr. Debra Suiter, PhD, Speech Language Pathologist at UK ALS Center, is conducting a clinical observational study to examine the quality of life of patients with swallowing problems related to ALS and their caregivers. 

 

*Please feel free to call at any time regarding ALS Clinical Trials or Contacts*


Heaven Hill Distillery

Parker's Promise of Hope (Web)

 

Parker's Heritage (2015)

 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”
www.alsa.org/ParkerBeamPromiseofHope 


Advocacy

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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.

 

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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. 

 

Sign up for action alerts and help us create a world without #ALS. Become an advocate today!

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The ALS Advocacy Conference goes VIRTUAL! 

For more information click the link! 


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Social Media
 
 
 
 

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*Check out our Facebook pages:

*ALS KY Chapter Page

*Northern KY Page

*Louisville KY Page

*Murray KY Page

*Lexington KY Page


$1 Dollar Difference Fundraisers

 

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Every penny counts! Make an impact in your community in the fight against ALS & start your own
$1 Dollar Difference fund.
 
 

-Poker Tournament
-Motorcycle/Bike Ride
-Garage Sale
-School Fundraiser
-Dine to Donate
-Car Show
-Hop, Bowk, Swim, and Skate A-Thons
-Golf/Mini Golf Tournament
-5K or Marathon
-Corn Hole Tournament
-Bake Sale
-Karaoke/Trivia Night
 
 

 Thank You!

Special thank you to our Walk Sponsors and Year Round Partners who continue to help us strive to find  a cure!