ALS Ice Bucket Challenge Progress

 
 Monthly Highlights

your health & safety is our main priority.jpg
 

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 the month of March. 

We are hoping to offer alternative options to continue this support if our pause extends past the month of March and we just tried our first EVER Zoom Support Group digital meeting on Wednesday, April 1st. 

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. 
91255892_10157380103546775_4034744835377201152_o.jpg 

Our Staff

g.jpg

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:
scams.jpg

Walk Details 

Here at the ALS Association KY Chapter, we are closely monitoring the rapidly evolving situation with COVID-19 and are taking proactive measures to support the communities we serve.  Our highest priority remains the health and safety of people with ALS and their caregivers, volunteers and our staff – as well as the greater community good.

 Even more so in times of challenge, programs and services to support families affected by ALS are broadly and urgently needed. In the face of the pandemic, access to in-person care for people with ALS has been suspended or reduced, causing added physical and emotional strain for both individuals fighting the disease, and those that care for them.

 ALS%20Lex%202019-159.jpg

Please note that our Walks are not cancelled, just postponed for future dates. When we reschedule our events, we will let everyone know.

Although the Louisville and Northern Ky Walks will be rescheduled, our Walk sites are still up and accepting donations.  Find a walk near you on the ALS Kentucky Chapter website .
We are inviting everyone to continue to build their teams and raise money to support our free care services programs in your communities. This help is needed now more than ever.

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

Grants and Scholarhips

Calmes-Scholarship_email-header.jpg

1. The Jane Calmes ALS Scholarship Fund: through May 18th 2020

In addition to the physical and emotional toll faced by people impacted by ALS, the financial strain of the disease can devastate a family’s ability to plan for future expenses.
Families impacted by ALS often do not have the financial means to support the pursuit of college degrees or vocational certificates.
Recognizing this unmet need, The ALS Association and Mark Calmes, vice chair of the Association's National Board of Trustees, established The Jane Calmes ALS Scholarship Fund in honor of Mark's wife, Jane, who lost her battle with ALS in 2017. The purpose of the scholarship fund is to provide financial assistance to students pursuing an accredited college degree or vocational certificate, and whose ability to cover the costs is severely compromised as a result of their family’s financial burden of ALS.

* Eligibility To be considered for The Jane Calmes ALS Scholarship Fund, an applicant must be:

●An individual who has had their finances negatively impacted due to having a diagnosis of ALS themselves, or having a parent, guardian, or family member (living or deceased) diagnosed with ALS;

●A high school senior, high school graduate, current postsecondary undergraduate student, or currently enrolled in vocational program;

●Planning to enroll for a minimum of six credits per semester in undergraduate study at an accredited two- or four-year college, university, or vocational-technical school for the entire upcoming academic year, in pursuit of completing a degree program;

●Able to demonstrate financial need. The ALS Association’s goal is to fund at least 30 students per year, at $2,500 per semester or $5,000 per year. Awards will be renewable up to three years or until a bachelor's degree is earned or graduation is achieved, whichever occurs first, based on satisfactory academic performance. 

 

To learn more about how to apply for this Scholarship, either enter or click on the following link: https://learnmore.scholarsapply.org/calmesscholarshipfund/

 

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. 

enews3.jpg

Available at www.butlerbooks.com

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

 


KENTUCKYS WALK TO DEFEAT ALS 2020-DATES AND PLACE ARE SUBJECT TO CHANGE

We come together to Walk for and with those who can't. We walk to raise awareness and support for ALS and those affected by this disease.

 

Registration is still open for teams:

Northern

Louisville

Lexington

Western

 

The NavyCharity (1).jpg

Northern KY Walk: Saturday May 9th 2020- POSTPONED

Florence Freedom Stadium

Register Here

 Check out the Northern Kentucky Walk to Defeat ALS Facebook Page HERE for events year round in NKY

 


2018 NKY Freedom Logo

Louisville Walk: Sunday May 17th 2020- POSTPONED

Louisville Slugger Field

Register Here

 Check out the Louisville Walk to Defeat ALS Facebook Page HERE for events year round in Louisville

2018 Louisville Bats Big Image

 

Western KY Walk: Saturday October 24th 2020

CFSB-MSU

Register Here

Check out the Western Kentucky Walk to Defeat ALS Facebook Page HERE for events year round in Western Kentucky


2018 WKY CFSB Center Logo

Lexington Walk: Saturday September 26th 2020

Whitaker Bank Ballpark 
 

Register Here

Check out the Lexington Walk to Defeat ALS Facebook Page HERE for events year round in Lexington

 whitaker-bank-ballpark-vector-logo.png

-------------------------------------------

If you have donations to turn in please include a note to where the donation should be credited and mail your donation to:

The ALS Association Kentucky Chapter
13102 Eastpoint Park Blvd
#101
Louisville, KY 40223 

Please contact our Event Managers: Daly Muller (Daly@alsaky.org) or Erin Gillespie-Hislope (Erin@alsaky.org) /call the office at 502-495-3672 if you need additional Walk information.


thumb_IMG_8472_1024.jpg

 

Volunteer and Service Hour Opportunities
  

volunteer.jpg 

 

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

NKY 1


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

p1.jpg

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

outside.jpg

 


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.
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

loan closet (2).jpg


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

helen.jpg

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!


61919981_2336791103309317_6520466666994794496_o.png

 
 
 

 

Social Media
 
 
 

 

60333355_10156932448610552_6443714325809987584_o.jpg

challenge-me-inyourfaceals-blog-header.png

Share your own challenges with us! 

*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

 

71231700_2425488441106249_6710187681835384832_n.jpg
 

 

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!