ALS Ice Bucket Challenge Progress

 

IMPORTANT INFORMATION ABOUT OUR CHAPTER AND THE CORONAVIRUS

The ALS Association St. Louis Regional Chapter understands that many of those we serve—people with ALS, their families and supporters—may have questions and concerns related to the spread of the Coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance on taking measures to ensure everyone’s protection during this time. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff. We have made minor temporary changes to programs and services until further notice. You can find out more about our Chapter and COVID-19 here.

Thank you for your patience as we manage this ever evolving situation.

For the most recent information about the Coronavirus (COVID-19), we recommend that you reference the websites for the CDC, World Health Organization (WHO), and the Missouri and Illinois Departments of Health. The United Way 2-1-1 Helps site also offers good information about local resources.

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.

For questions about how COVID-19 will impact the support you receive from our organization, contact Katie McGovern, President and CEO at kmcgovern@alsastl.org or Anna Zelinske, Director of Programs and Services for Patient Care at azelinske@alsastl.org, 314-432-7257.

CHAPTER NEWS

MARK YOUR CALENDAR FOR THE 2021 ST. LOUIS WALK TO DEFEAT ALS® AS WE #ALSWalkYourWay!

ST. LOUIS – Saturday, June 26

Join us on June 26, 2021, for the St. Louis Walk to Defeat ALS presented by Dowd Bennett. For the safety of our ALS community during the global COVID-19 pandemic, we will continue to Walk Your Way this year in place of in-person. We urge you to join us in fundraising to support the programs and services we provide for those living with ALS, research and advocacy. Since the first Walk to Defeat ALS 20 years ago, Walk Day has been a moment to mobilize and declare our unwavering commitment to ending ALS. We’ve had Walk Days with torrential downpours, excessive heat, and more. Through it all, those challenges have never stopped the biggest force in this effort: You. Follow the Walk to Defeat ALS St. Louis Regional Chapter Facebook page for all of the latest information. And we want to see how you Walk Your Way this year, so be sure to use the hashtag #ALSWalkYourWay when you post about your Walk on social media.

Thank you to our Presenting Sponsor Dowd Bennett and additional sponsors, Raymond James, Alliance Rehab and Medical Equipment, Numotion Foundation and The Family of Ray Van de Riet Sr. 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.

LOU GEHRIG DAY SHINES A SPOTLIGHT ON ALS ACROSS MAJOR LEAGUE BASEBALL

Baseball, Lou Gehrig and ALS have been forever linked from the day he stood at Yankee Stadium’s home plate and gave his “Luckiest Man” speech. That bond has been made stronger with the inaugural Lou Gehrig Day on June 2. All across the MLB, time was taken to honor and celebrate the legacy of the Hall of Fame first baseman and to raise awareness and funds to fight ALS. It has been announced that going forward each June 2 will be designated Lou Gehrig Day.

In honor of the first Lou Gehrig Day, our Chapter is hosting a baseball raffle to raise funds and help spread awareness of ALS. In partnership with the Cardinals, we are offering five Paul Goldschmidt autographed, Lou Gehrig Day branded baseballs to be raffled off. Through Sunday, June 6, you can purchase your chance for $10 to win one of these authentic baseballs by visiting: http://bit.ly/LG4DayBaseball.

2021 NATIONAL ALS VIRTUAL ADVOCACY CONFERENCE REGISTRATION OPEN

Registration for the 2021 National ALS Virtual Advocacy Conference is now open to the public. To register, visit: www.alsadvocacyconf.org.

The conference, modeled on last year’s successful event, will bring together ALS advocates from across the country from June 8 through June 17 to learn about the latest updates in ALS research, care services and advocacy, and to participate in a virtual day of action. Live sessions will be held on June 8, 9 and 10 that will highlight our focus of finding new treatments and cures for ALS, preventing and reducing the harm of ALS and optimizing current treatments and care.

ALS ASSOCIATION ANNOUNCES GOAL OF MAKING ALS LIVABLE BY 2030

As you may have seen, the ALS Association has announced a goal of making ALS a livable disease by 2030. The ALS Association has made it clear that this goal does not in any way replace our vision of creating a world without ALS, but believes that with the right focus and enough resources, within a decade, people with ALS will be living longer lives, with greater quality of life, and that some people at higher risk will be prevented from getting the disease.

The plan puts an emphasis on more and faster clinical trials, improved delivery of state-of-the-art care to all people living with ALS, and the identification of risk factors to treat ALS as soon as possible, including before symptoms develop. You can learn more at: ALS.org/livable.

VIRTUAL SUPPORT GROUP PROGRAM

In an effort to extend the reach of our services during the current pandemic and beyond, we have begun a virtual support group program. The current group is a mixture of people with ALS and caregivers of people with ALS. We have gotten great feedback from attendees and are hopefully more people will join us going forward. Our next support group will be held on Tuesday, June 8, at 6:30 p.m. You can find out more and register here.

LIFE AND ESTATE PLANNING FOR EVERYONE IMPACTED BY ALS

The ALS Association St. Louis Regional Chapter is here to help address the unique needs that people with ALS, their families, friends, and caregivers face when planning for their futures. No matter your situation, we can help! Let’s work together to put a plan in place aligned with your future goals, establish your philanthropic legacy, and give yourself some future peace of mind. Click here to get started!

CHAPTER EVENTS

SWING FOR A CURE GOLF TOURNAMENT

Friday, August 27, 2021
Glen Echo Country Club

The ALS Association Swing For a Cure Golf Tournament is celebrating its 26th Anniversary this year. Save the date for this time-honored annual event to be held on Friday, August 27, 2021, 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. This annual event features 18 holes of golf, a mouth-watering brunch, plus exciting games and vendors on the course. Registration and brunch open at 8:30 a.m. with a 10 a.m. shotgun start.

Thank you to our sponsors: Aero Charter, Assistance Home Care, Alliance Rehab and Medical Equipment, BARBERMURPHY, FranchiseVision, Numotion, Permobil Foundation, RN Services, The St. Louis Trust Company, and Wine-Tapa.

To purchase foursomes, sponsorships, register for free for the virtual auction and to read more about our event visit http://bit.ly/2021SwingForACure. For more information on how you can get involved or to volunteer on the day of the event, contact Brittany Hafford at bhafford@alsastl.org or 314-432-7257 ext. 224.

11th ANNUAL KIMMSWICK 5K

Saturday, July 24, 2021
Blue Owl Restaurant - Kimmswick, Missouri

Keep your eyes on the pies and join us for the 11th annual Kimmswick 5K (5K run and 1-mile walk and fun run)! 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). All participants receive a buttery soft, vintage-like shirt featuring the famous "Keep Your Eyes on the Pies" slogan. During registration, participants can opt to add on a one-of-a-kind performance headband and wooden finisher’s medal.

Thank you to our presenting sponsor The Blue Owl as well as Burgess Orthodontics, First Baptist Church of Arnold, Home Service Oil Express Mart, Jefferson County Running Club, Precision Dental Care, and Numotion. Visit the website to register or make a donation https://raceroster.com/events/2021/46256/kimmswick-5k. Questions or need help signing up? Please contact Brittany Hafford at bhafford@alsastl.org or 314-432-7257 ext. 224.

MARK YOUR CALENDAR FOR THE 2021 SPRINGFIELD WALK TO DEFEAT ALS®

SPRINGFIELD, ILLINOIS – Sunday, September 19
Registration: 1 p.m. | Opening Ceremony: 2 p.m.

Please join us for the 2021 Springfield Walk to Defeat ALS on Sunday, September 19 at Southwind Park. It is official! The restrictions have been lifted to allow a maximum of 500 attendees outdoors and our event take place in person at Southwind. Our event will follow all state, local and CDC COVID-19 guidelines. 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? Please contact Andrea Flanigan at: aflanigan@alsastl.org.

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:

ALS AWARENESS NIGHT AT RENT ONE BALLPARK - SOUTHERN ILLINOIS MINORS
It’s time for ALS Awareness Night on Sunday, June 13 at Rent One Ballpark. Join us for a pre-game Walk around the field and other exciting elements for a night of ALS Awareness. ALS Awareness Pre-Game Parade starts at 4:35 p.m. with the ballgame following at 5:05 p.m. Purchase tickets by visiting https://bit.ly/2ODjUUF and enter the Group Password ALS2021. See you there! Contact Lori Dobbs at ldobbs@alsastl.org with questions or for more information.