ALS Ice Bucket Challenge Progress

 
 Monthly Highlights!

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Rock Your ALS

Looks like this ROCKIN event was great!
Thanks to our two Advisory Commitee members: Sarah Curtis & Lena Isaacs for continuing to put on an awesome Third Party Event!

 

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Lexington Legends Spongebob/ALS Night

This event was fun for ALL ages! It also helped us raise money by trying out our new "Wheel" and raise awareness by promoting our upcoming Lexington Walk to Defeat ALS! 
 Spongebob jerseys were also auctioned off and all proceeds were given to the ALS KY Chapter! 
Special thanks to Whitaker Bank Ballpark! 

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Photos from our May Northern KY and Louisville KY Walks

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Share your photos from the 2019 Walks with us! Send to Madison Stewart at: madison@alsaky.org.


Advocacy

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Our Executive Director, Helen Overfield, attended the 2019 Advocacy Conference in Washington D.C. Here, she spoke with representatives on the issues that ALS patients and families face. Get involved in advocacy or follow our "fight for the cure" on Facebook

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Our Care Services Director, Patricia Peak, also attended the 2019 Care Services Conference in St. Louis! She is excited to share her experience with our patients and caregivers!


BIG NEWS

Our Care Services Department was excited to announce that the ALS Resource Guides for new patients were delivered!

No more multiple booklets sent from Care Services, now ALL of the information needed has been revamped into ONE easy guide!

Thank you to HighNote Printing!

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KENTUCKYS WALK TO DEFEAT ALS

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.

 Northern Kentucky Walk - May 4, 2019
Florence Freedom Stadium

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

We would like to thank our Northern Kentucky Walk Sponsors for their incredible support.


2018 NKY Freedom Logo

Check out all of our local 2019 NKY Walk to Defeat ALS Sponsors HERE 

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Louisville Walk - May 11, 2019
Louisville Slugger Field

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

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Check out all of our local 2019 Louisville Walk to Defeat ALS Sponsors HERE 

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UPCOMING 2019 WALKS:

*Western Kentucky Walk - October 12, 2019*
CFSB-MSU

REGISTRATION IS NOW OPEN!!!

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

We would like to thank our Western Kentucky Walk Sponsors for their incredible support.


2018 WKY CFSB Center Logo

Check out all of our local 2018 Western Kentucky Walk to Defeat ALS Sponsors HERE 

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*Lexington Walk - September 28, 2019*
Whitaker Bank Ballpark 

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

We would like to thank our Lexington Kentucky Walk Sponsors for their incredible support.

Check out all of our local 2018 Lexington Walk to Defeat ALS Sponsors HERE 

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If you still 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 Daly Muller by email- Daly@alsaky.org or call the office at 502-495-3672 if you would
like a Walk information packet, need additional information or have any questions.


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Volunteer and Service Hour Opportunities

If you have any questions about participating in a Walk, registering, holding a fundraiser, or volunteering please contact:

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

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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

Murray 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
Central Bank - Community Room
9300 Shelbyville Road -2nd Floor
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.



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.


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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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

 


Upcoming Walk Information

The ALS Association KY Chapter wants to thank our presenting

Join The Movement

We are excited to announce our 2019 Lexington Walk to Defeat ALS Presenting Sponsor: TOYOTA! 

*9/28/2019*

*Whitaker Bank Ballpark, Lexington KY*

*Check-in/Registration Opens-9AM*

*Walk Begins-10AM*

 

Toyota Is Working Hard To Defeat ALS

 

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Above are highlights from our recent Team Captains and HR Meetings at Toyota! Each team was very excited to reach their fundraising goals!!

Join Toyota in the fight to defeat ALS and register today!


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Five Year Anniversary of the Ice Bucket Challeng/Challenge Me Campaign

The ALS community is challenging everyone to do anything and everything they can to cure ALS!

Recent Ice Bucket Challenge Story Click HERE!
Recent Challenge Me #InYourFaceALS Story Click HERE!

 

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Share your own challenges with us! 

*Check out our Facebook pages to see celebrities like Reese Witherspoon & Giada De Laurentiis   #IceBucketChallenge & #InYourFaceALS*

FOLLOW US!!!

Facebook:

*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


REGISTRATION

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Get your team together TODAY and start helping us "Walk To Defeat ALS"

For more info visit: web.alsa.org

Thank you to our Kentucky Chapter Year Round Partners!

Parker Haritage (Small)
Norton Neuroscience Institute