ALS Ice Bucket Challenge Progress

 

CHAPTER NEWS

MAY IS ALS AWARENESS MONTH

May is ALS Awareness Month, the time of year we work to remind everyone that we will do whatever it takes to ensure people with ALS are empowered to live their lives as they want and to eliminate or reduce the physical, emotional, and financial burdens of living with ALS.

Throughout May, we will be sharing stories and information about ALS on our social media channels and our blog ALS Connect. We encourage you to share these with your networks to remind them of the people living with ALS in our community.

FUNDS FOR CHILDREN’S ACTIVITIES AVAILABLE THANKS TO BLUES FOR KIDS

Thanks to a grant from St. Louis Blues for Kids, our Chapter has funds available to help offset the costs of children’s activities such as recreational classes, expenses related to extracurricular activities, sports team uniforms or fees, music lessons, and summer or day camps that would not otherwise be feasible due to astronomical expenses of ALS. Funds are limited so please contact your Care Service coordinator for more information on how to apply. Funds are restricted to children related to people with ALS who are under 18 years of age.

ALS ADVOCACY CONFERENCE HAPPENING VIRTUALLY IN JUNE

The ALS Advocacy Conference is coming up June 14-16. As it has been the last few years, the conference will be held virtually, allowing those from across the nation to learn about the latest advancements in ALS research, care services and advocacy, and to contact their members of Congress about issues important to the ALS community throughout the event. Registration in open now, so sign up and join the fight.

ALS YOUTH ACTION DAY

May 14 is ALS Youth Action Day, a day on which young people are encouraged to unite to take a stand against ALS. This year’s ALS Youth Action Day is built around a variety of straightforward online activities that kids of any age can coordinate and lead to make a positive impact in the lives of people living with ALS. Visit the ALS Association Youth Action Day site to find out more about how you can participate, and make a difference.

JANE CALMES ALS SCHOLARSHIP APPLICATIONS DUE MAY 18

Applications are now being accepted for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Applications for this year’s scholarships are being accepted through May 18, 2022, and will be distributed for the fall 2022 and spring 2023 semesters. The fund was established by Mark Calmes, member of The ALS Association’s National Board of Trustees as well as a board member of the ALS Association St. Louis Regional Chapter, in memory of his wife, Jane, who bravely fought ALS for eight years. Apply here: http://www.als.org/calmes.

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 May 9. 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, May 24, at 4 p.m. (note the new day and time) You can find out more and register here.

JOIN THE LEGACY SOCIETY

What will your legacy be? Many caring people like you have chosen to create a philanthropic legacy in the pursuit of a cure for ALS. You can become a Legacy Society member by including a gift to the Association in your will or trust. You can also designate the ALS Association as a beneficiary of your IRA, 401(K), Donor Advised Fund (DAF), or life insurance policy. Membership is obligation free, there are no dues, and no amount or percentage is too small or too large, click here to learn more. If you yourself have committed to a gift in your estate plans and/or would like to join the Legacy Society, please let Natalie Pottebaum know by reaching out to natalie.pottebaum@als.org.

CHAPTER EVENTS

MARK YOUR CALENDAR FOR THE 2022 WALKS TO DEFEAT ALS®

ST. LOUIS — Saturday, June 25

Join us on Saturday, June 25, for the St. Louis Walk to Defeat ALS in Forest Park. This year we have a goal of raising more than $450,000 and we know it is a goal we can accomplish together. Register today at WalkToDefeatALS.org. Contact Elizabeth Roe at eroe@alsastl.org or 314-432-7257 ext. 226 with any questions.

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., Compassionate Nursing Services, Gadellnet, Numotion Foundation, Southern Bus & Mobility, Maxim Healthcare Services, Permobil Foundation, Phillips, and St. Francis Healthcare.

SPRINGFIELD, ILLINOIS — Saturday, September 17

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, 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.

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 & Bakery, as well as Alliance Rehab and Medical Equipment, Home Service Oil Express Mart, and In Memory of Jumpin’ Jack Johnson. Visit the website to register, volunteer, or make a donation: https://raceroster.com/events/2022/58563/kimmswick-5k. Questions or need help signing up? Please contact Brittany Smith at bhafford@alsastl.org or 314-432-7257 ext. 224.

SWING FOR A CURE GOLF TOURNAMENT

August 26
Glen Echo Country Club

Join us for the 27th Annual Swing for a Cure Golf Tournament. This event features 18 holes of golf, lunch, and games on the course at the historic Glen Echo Club. Following your round, enjoy cocktails, buffet, and silent auction topped off by hearing how your round supports people with ALS and the search for a cure.

Thank you to our sponsors: Aero Charter and Alliance Rehab and Medical Equipment. To purchase tickets or 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.

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.

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.