Ice Bucket Challenge Progress

 

CHAPTER NEWS

NOVEMBER IS NATIONAL FAMILY CAREGIVERS MONTH

November is dedicated to recognizing the sacrifices that caregivers make to take care of their loved ones. Being a caregiver to someone with ALS can be rewarding, but it also takes a toll both physically and mentally. Throughout the year we offer help for caregivers to balance these needs, but during November for Nationa Family Caregivers Month we’ll be honoring their work and sharing advice through our blog, ALS-connect.org and sharing important information for caregivers on our Facebook page. Thank you caregivers for everything you do for people with ALS!

RESEARCH PARTICIPATION OPPORTUNITY FOR PATIENTS WITH ALS

The Answer ALS project aims to create a foundation of behavioral and genetic data to better understand the pathology of ALS, identify biomarkers of the disease, and identify new biological pathways for treatment.

You may qualify for this study if:

  • You have been diagnosed with ALS or another motor neuron disease
  • You do not have Spinal-Bulbar Muscular atrophy or a known diagnosis of HIV/AIDS, Hepatitis B or Hepatitis C
  • You are between the ages of 18-100

If you qualify, we will ask you to come in for one visit every three months for five visits total. At each visit we will review changes in your health and medications, draw blood, and perform cognitive assessments and strength testing. ALS participants who complete study visits outside of their regularly scheduled clinic appointments will also receive a $50 gift care from Washington University.

This study is being conducted at Washington University, 660 S. Euclid, St. Louis, MO.

If you would like to know more about this study, please contact Elizabeth Karanja at 314-273-1871 or email us at neuroclinicalstudies@wustl.edu.

FUNDRAISE THROUGH FACEBOOK

Facebook fundraisers are a great way to show your support for people with ALS and their families and it’s easy! Turn your birthday, anniversary, or any other occasion in to an opportunity to support families with ALS! Visit our page for step-by-step instructions, tips and information on starting your own fundraiser.

CHAPTER EVENTS

SAVE THE DATE FOR THE 2018 ICE BUCKET BASH

The Ice Bucket Bash is a fun, energetic party that puts St. Louis celebrities in the cold seat taking the ice bucket challenge on stage to raise money for the ALS Association St. Louis Regional Chapter. It will be a fun night of cocktails, dinner, a live auction and an ice bucket challenge Fund the Need.

Watch these celebrities take the Ice Bucket Challenge live on stage:

  • Mike Shildt: Manager, St. Louis Cardinals
  • Ann Marr: VP of Global Human Resources, World Wide Technology
  • Munsok So: President & CEO, So Hospitality Group
  • Trish Gazall: On-air personality, KEZK
  • Chris Pronger: Former defenseman, St. Louis Blues

Join us on Friday, November 16 for the coolest party in St. Louis. For more information on sponsorship or tickets, please contact Andrea Flanigan aflanigan@alsastl.org 314-432-7257 ext. 231.

WALK TO DEFEAT ALS® WEBSITE IS STILL OPEN

This will be the last month to donate to the 2018 Walk to Defeat ALS. So far, more than $163,000 of our $175,000 goal has been raised for Springfield and more than $420,000 of our $430,000 goal has been raised for St. Louis. To donate to either Walk, visit http://walktodefeatals.org—don't forget to ask your employer about matching gifts. Save the date for the 2019 Walks:

St. Louis Ι Saturday June 22, 2019

Springfield Ι Saturday, June 15, 2019

VOLUNTEERS NEEDED FOR EVENT COMMITTEES

Interested in being involved in the “behind the scenes” of our events? Looking for a fun, rewarding volunteer opportunity that makes a difference to people with ALS and their families? Join one of our event committees! You can become an event committee member for:

  • Springfield, IL Walk to Defeat ALS
  • St. Louis Walk to Defeat ALS 
  • 5Kimmswick 
  • Swing for a Cure Golf Tournament
  • Ice Bucket Bash

Some responsibilities include helping book vendors, securing in-kind donations, recruiting volunteers, and assisting with overall input and planning of the event. Time commitment is one meeting (either in person or via conference call) a month. For more information, please contact Andrea Flanigan aflanigan@alsastl.org 314-432-7257 ext. 231 or Natalie Pottebaum npottebaum@alsastl.org 314-432-7257 ext. 230.

COMMUNITY PARTNER EVENTS

Every year, more than 30 community partner events are hosted in support of The ALS Association St. Louis Regional Chapter by families, groups and individuals.  Join us for the following events:

Hot Cider Hustle 5K
Saturday, November 3, 2018
Missouri Runs and All Community Events present the Hot Cider Hustle in Forest Park at The Muny. Packet pick-up and registration begin at 7 a.m. with the race starting at 8:05 a.m. A portion of the proceeds go to the ALS Association St. Louis Regional Chapter. Use coupon code RUN4ALS for 10% of your registration fee to go toward the Chapter. Volunteers are still needed to help—if you're interested in volunteering, please reach out to Michelle Reynolds Gray at 314-432-7257 ext. 224 or mgray@alsastl.org. For more information on how to register, packet pick-up, etc., you can visit https://missouriruns.com/stlouishotciderhustle.

Phillipalooza 2018
Friday, December 7 and Saturday, December 8, 2018
Phillipalooza is a benefit concert to raise money and awareness to help fight ALS. It began in 2006 as a way to celebrate the life of Phillip Wright Sr. Phillip was the father of local musician Phil Wright and an avid lover and supporter of live music. Once again the two night event on December 7th and 8th and will feature live music at the Old Rock House as well as silent auctions, 50/50 raffles, and more! Advanced tickets available through the Old Rock House or in person. For more information, please visit https://www.facebook.com/Phillip-A-Looza-164494143566227/. A portion of the proceeds to benefit the St. Louis Chapter.

Are you interested in a new way to support the Association this year?  Consider hosting your own Community Partner event. Community Partner fundraising events are organized and managed by a family, group, or individual that would like to raise money to support the ALS Association St. Louis Regional Chapter.  Examples of these events include golf outings, bike rides, auctions, raffles, walks, or runs.  Be creative and come up with an event we’ve never heard of before!  Have fun and support the Association at the same time.  Contact Andrea Flanigan at 314-432-7257 x8 or aflanigan@alsastl.org to get started.

 

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