CHAPTER NEWS
UPDATE ON WASHINGTON UNIVERSITY MINDFULNESS, SELF-COMPASSION AND ALS STUDY
Earlier this year, we told you about a study at the ALS Center at Washington University School of Medicine to better understand how mindfulness and self-compassion may help with emotion regulation, well-being, and quality of life for people with ALS. The pilot of the study has been completed, and while the results are still being analyzed, we recently took a deeper dive in the study and what the its future may hold on our blog ALS Connect. You can read about it here.
THANK YOU TO EVERYONE WHO JOINED US FOR THE 2022 ST. LOUIS WALK TO DEFEAT ALS®
THANK YOU! What an amazing turn out for the St. Louis Walk to Defeat ALS on Saturday, June 25. We were so thrilled to host the first in person event in two years. If you were not able to attend on Saturday and you need to turn in donations, they can be mailed to the ALS Office at 1950 Craig Rd., Suite 200, St. Louis, MO 63146. Please be sure to include a note with your name and team name. For anyone who worked hard to create a team t-shirt or banner and would like to be included in the running for our Walk day awards, please send Elizabeth Roe a picture of your design at eroe@alsastl.org.
We have currently raised over $425,000 towards our $450,000 goal. Amazing! The St. Louis Walk to Defeat ALS website will remain open until the end of November and will be excepting donations until then.
Thank you to our Presenting Sponsor Dowd Bennett LLC and additional sponsors, Belden Inc., Raymond James, Alliance Rehab & Mobility, The Family of Ray Van de Riet Sr., Amylyx Pharmaceuticals, Compassionate Nursing Services, Gadellnet, Numotion Foundation, Southern Bus & Mobility, Maxim Healthcare Services, Permobil Foundation, Phillips, Assistance Home Care, Bethesda, Mike Grisham and Katy Walter-Grisham, St. Francis Healthcare, SHC Foundation, and United Access.
SUPPORT GROUPS OFFER HELP AND COMMUNITY
There are times we can all use support, and community. Our support groups offer comfort and connection for people with ALS, caregivers, and family members at all stages of their journey.
Our VIRTUAL CAREGIVER SUPPORT GROUP is designed for the unique experiences and needs of ALS caregivers. The group meets the second Monday of each month at 3 p.m. and the next meeting is July 11. To register, visit: https://bit.ly/Caregiver_Group_Registration.
Our VIRTUAL SUPPORT GROUP PROGRAM is a mixture of people with ALS and caregivers of people with ALS. The group meets the fourth Tuesday of each month, and the next meeting is Tuesday, July 26, at 4 p.m. You can find out more and register here.
ENROLL IN THE NATIONAL ALS REGISTRY
Because learning about ALS is an important step in the battle to defeat it, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has developed the National ALS Registry to gather confidential health information from people who are living with the disease.
The National ALS Registry collects information to help researchers learn more about who gets ALS and what causes it. The Registry collects, manages and analyzes data about persons with ALS so scientists can look for disease pattern changes over time and help identify whether there are common risk factors among persons with ALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials.
Please visit the ALS registry website at www.cdc.gov/als to enroll in the registry and begin completing the survey modules that will help advance the search for the cause, treatment, and a cure for ALS.
CHAPTER EVENTS
KIMMSWICK 5K & 1 MILE FUN RUN/WALK
Saturday, July 30
Blue Owl Restaurant & Bakery
Keep your eyes on the pies and join us for the 12th annual Kimmswick 5K and 1 mile Walk and Fun Run on Saturday, July 30! The Blue Owl Restaurant & Bakery’s famous “Levee High” apple pies will be awarded to the top overall male and female finishers. Hang around post-race for attendance prizes, refreshments, raffles, music, shopping and more! Run through historic Kimmswick and along the Mississippi River, the Anheuser Estate and the Windsor Harbor Bridge (the oldest known wrought iron bridge in Missouri). Thank you to our presenting sponsor The Blue Owl Restaurant and Bakery as well as Alliance Rehab and Medical Equipment, Burgess Orthodontics, Express Mart, First Baptist Church of Arnold, In Memory of Jumpin’ Jack Johnson, and ProMedica. To register, to purchase a sponsorship, or for more information, please visit: https://raceroster.com/events/2022/58563/kimmswick-5k. Please contact Brittany Smith at bhafford@alsastl.org or 314-432-7257 ext. 224, if you would like to get involved or if you have any questions.
SWING FOR A CURE GOLF TOURNAMENT
Friday, August 26
Glen Echo Country Club
The ALS Association Swing For a Cure Golf Tournament is celebrating its 27th Anniversary this year on Friday, August 26, at the historic Glen Echo Country Club. Glen Echo Country Club combines a great golf experience with the unmatched beauty of the landscape with a legacy spanning over 100 years. Thank you to our presenting sponsor, Associated Bank, as well as our other sponsors: Aero Charter, Assistance Home Care, Alliance Rehab and Medical Equipment, BARBERMURPHY, EMS, Inc., FranchiseVision, Frank Leta Automotive, Friends and Family of Wayne Barber Sr., Permobil Foundation, The Mark Calmes Family, The St. Louis Trust & Family Office, and Wine-Tapas, Wilson’s Structural Steel, and Wolff and Taylor.
We have sold out of foursomes for the event, but are still looking for additional flag, hole and food and beverage sponsorships. To purchase sponsorships, visit our website: https://bit.ly/2022SwingForACure. For more information on how you can get involved or to volunteer on the day of the event, contact Brittany Smith at bhafford@alsastl.org or 314-432-7257 ext. 224.
JOIN US FOR THE 2022 SPRINGFIELD WALK TO DEFEAT ALS®
Saturday, September 17
Southwind Park, Springfield, Illinois
Please join us for the 2022 Springfield Walk to Defeat ALS on Saturday, September 17, at Southwind Park. There will be live music, balloon animals, vendors and so much more! We want to thank our walk sponsors - presenting sponsor The Jane Calmes Family, Memorial Health System, Warren-Boynton State Bank, Numotion Foundation, Permobil Foundation, Phillips Respironics and Mitsubishi Tanabe Pharma America. In addition to the event at Southwind, all teams have the option of hosting their own Walk Your Way Event in their own neighborhood. To register and for additional information, please go to http://web.alsa.org/SpringfieldIL Questions or need help registering? Please contact Andrea at aflanigan@alsastl.org.
GAME ON!
Friday, October 21
The Ritz Carlton
Save the Date for the 2022 Game On! event at The Ritz Carlton. Game On! is The ALS Association’s premier dinner event, combining fun and fundraising in one elaborate extravaganza. This energetic party will continue to be a “Game Changer”, carrying on the momentum of the Ice Bucket Bash, and positively impacting the future of the ALS landscape.
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:
ITALIAN OPEN
Save the Date for the St. Louis Italian Open Golf Tournament for Children’s Charities. The golf tournament will be held on Monday, August 1 at the Legends Country Club in Eureka. For more information, contact Shannon Duffin at 314-308-6243 or register online at www.italianopen.org.
BALK REALTY CHARITY GALA
Balk Realty invites you to their charity gala benefitting The ALS Association St. Louis Regional Chapter. Join us, Friday, August 5, at Andre’s in Sunset Hills. Tickets include dinner, open bar, raffles, photo booths, and more! Click here for more information or to purchase tickets.
ALS NIGHT AT THE O’FALLON HOOTS
Join us for ALS Night at the O’Fallon Hoots on Friday, August 5, vs. the Cape Catfish. Gates open at 5:35 p.m. with first pitch at 6:35 p.m. Tickets are $9 and the deadline to purchase is July 16. For more information or to purchase tickets, contact Kevin Rudolph at 314-808-1632.
HOT CIDER HUSTLE
Time again for the annual Hot Cider Hustle. The 5k run will take place on October 29, at 8:30 a.m. For more information visit: https://missouriruns.com/stlouishotciderhustle.
ST. LOUIS HALF MARATHON
Join the St. Louis Track Club for the St. Louis Half Marathon on Sunday, November 6, at the Muny in Forest Park. The ALS Association St. Louis Regional Chapter is their Charity partner this year with a portions of the proceeds coming to our Chapter. For more information or to register, visit https://runsignup.com/Race/MO/SaintLouis/StLouisHalfMarathon. Use code ASLA10 for 10 percent off your registration. If you would like to volunteer, contact Brittany Hafford at bhafford@alsastl.org.
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