ALS Ice Bucket Challenge Progress

 
Monthly Highlights

 

 

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Organize Your Own 2020 Mini-Walk to Defeat ALS

 

 
Saturday, July 25th – Northern Kentucky

 

Saturday, August 22nd- Louisville 

 

*In your neighborhood/community

 

*Engage family, friends, neighbors

 

*The event has now “come” to your community so involve it!

 

*If possible, involve the individual living with ALS you are walking in honor of

 

*If you need to organize a caravan “walk”, that works too!

 

*Just be sure to decorate all vehicles in the caravan to bring extra awareness!!

 

*Host a post-walk gathering!

 

*Take lots of photos and make new memories!

 

 

*For more information check out this link for our first ever virtual kickoff!*

 

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Such a fun evening learning all about our upcoming Lou/NKY Walks to Defeat ALS! Had a lovely turnout on Zoom and Facebook-Live!

 

Thanks to all for joining our first ever Virtual Walk Kickoff!! Hope everyone is as excited as we are! 

 

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The ALS Advocacy Conference goes VIRTUAL! 

 

For more information click the link! 

 

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Patsy Harkess is walking 500 miles on behalf of her friend diagnosed with ALS. Thank you Patsy for all your efforts! 
Check out Patsys story here!!

 

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Stay Home 4 ALS

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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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Please see the information below for those of you with children in your family at home:

Winning With ALS has grants available. Our mission is to provide support for families with children still in the home who are living with a parent diagnosed with Amyotrophic Lateral Sclerosis (ALS).

Grants could come in the form of support for vacation expenses, little league dues, camp costs, school tuition, or any other financial need that would assist the family in providing a degree of normalcy for their children.  Please visit our website here for  a link to an application.


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Our 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 no matter what. In good times and bad, we know you’re with us.

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

 

Office Administrator/Volunteer Coordinator: Madison Weiter-madison@alsaky.org

 

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

 

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

 

 

Our staff urges you to please be on the lookout for possible scams:

 

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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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More information to come in regards to the Lexington and Western KY Walks!

Registration is open for teams:

Northern

Louisville

Lexington

Western


Any questions regarding these two walks, please contact our Event Managers:
Daly Muller (Louisville) daly@alsaky.org
Erin Gillespie-Hislope (NKY) erin@alsaky.org

 


Chapter News

A great newly published book - Carrey Dewey, from Louisville, KY lost her battle with ALS.

Her blog posts and social media posts are inspiring and humbling. 

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Available at www.butlerbooks.com

Proceeds go to ALS patients and research. Please share with others. 

 


 

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:

Madison Weiter at 502-495-3672 or madison@alsaky.org

Or register here

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Kentucky Chapter Care Services

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. 

 

We will include informational speakers on occasion and have general discussions relating to your experience in caring for someone who had ALS.
 
   
 
 
 
Support Group Meetings

Unless told otherwise, our Louisville Support Group Meetings will be held from now on at our Louisville Office: 13102 Eastpoint Park Boulevard Suite #101 Louisville KY 40223

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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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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 for a cure!