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

JOIN US FOR THE 2021 SPRINGFIELD WALK TO DEFEAT ALS®

SPRINGFIELD, ILLINOIS – Sunday, September 19
Southwind Park – 4965 S 2nd Street
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. 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. Thank you to our presenting sponsor The Jane Calmes Family and to our other sponsors Warren-Boynton State Bank, BRANDT, and Studio Bliss Photography for their support.

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.

SOUTHEAST MISSOURI STATE UNIVERSITY ALS RESEARCH STUDY LOOKING FOR PARTICIPANTS

The Speech Language Pathology program at Southeast Missouri State University is conducting a research study about factors predicting quality of life for people with ALS. Participants are required to be 18 to 75 years old, formally diagnosed with ALS for at least one year, and not be suffering from any other illnesses or diseases that affect their ability to take an online survey. The survey consist of 29 questions regarding patients’ perceptions of self-efficacy (the belief that you have the ability to adequately manage and cope with the symptoms of ALS), social communication skills with or without the use of AAC, and quality of life. The survey will take between 15 to 25 minutes to complete. No personal identifying information will be requested and the information will be used for the future treatment of people with ALS. Those interested and matching the survey criteria can visit: https://semocehhs.sjc1.qualtrics.com/jfe/form/SV_cun2d5zBsmAKFAG for more information.

VIRTUAL SUPPORT GROUP PROGRAM

In an effort to extend the reach of our services during the ongoing pandemic and beyond, we began 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 hopeful more people will join us going forward. Our next support group will be held on Tuesday, September 14, at 6:30 p.m. You can find out more and register here.

SUMMER 2021 NEWSLETTER AVAILABLE NOW

It has been a while, and we have much to update you on in the latest edition of The Update. Our summer 2021 Chapter newsletter—The Updateis available online now. We meet a local UFC star who’s most important role is caregiver to his grandmother with ALS. We hear from our President/CEO Katie McGovern about how our Chapter has set bold goals for our service to our ALS community, and we look at how we are transforming our office space to into something much, much more. You can find that and more at: https://bit.ly/TheUpdateSummer2021.

THANK YOU FOR YOUR SUPPORT OF SWING FOR A CURE

The 26th Annual Swing for a Cure Golf Tournament was a wonderful day of golf, community, and even some lighting, all to aid us in our work to create a world without ALS. A lot of hard work went into making the golf tournament happen and we would like to sincerely thank all of the golfers, volunteers and sponsors for their participation. Because of your commitment to this important cause we were able to break records and raise over $111,000 for local patient care services, advocacy and cutting-edge research.

A special thanks to our Presenting Sponsor: Associated Bank and sponsors: Aero Charter, Assistance Home Care, Alliance Rehab and Medical Equipment, BARBERMURPHY, FranchiseVision, Friends and Family of Wayne Barber Sr., McCarthy Building Companies, Inc., Numotion, Permobil Foundation, RN Services, The Mark Calmes Family, The St. Louis Trust Company, and Wine-Tapa & Wolff and Taylor.

If you or your company would like to get involved with next year’s tournament, contact Brittany Hafford at bhafford@alsastl.org or 314-432-7257 ext. 224.

CHAPTER EVENTS

IT IS TIME FOR “GAME ON!”

Friday, November 12, 2021
Union Station, St. Louis

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.

Guests can anticipate a whimsical event inspired by the popular game show, Family Feud. Two teams made up of local celebrities and guests will compete, with guests supporting them prior to start with a paddle raise style auction. This will be an exciting night with a live and silent auction, celebrity incentives, and tough competition! Guests can also buy their way onto a celebrity team to be a part of the fun. The team that raises the most money gets points added to their team score BEFORE the game begins, and the team with the most points at the end of the night will be crowned the winner.

Sponsored by AeroCharter. For more information or to sponsor the event contact Elizabeth Roe at eroe@alsastl.org or visit https://bit.ly/2021GameOn.

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
Time again for the annual Hot Cider Hustle. The 5k run will take place on Saturday, November 6, 2021, 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 7, 2021, at the Muny in Forest Park. The ALS Association St. Louis Regional Chapter is their Charity partner this year with a portion of the proceeds coming to our Chapter. For more information or to register, visit https://runsignup.com/Race/MO/SaintLouis/StLouisHalfMarathon.

12 BARS OF CHARITY
Save the Date for this year’s 12 Bars of Charity event happening on Saturday, December 18, 2021, from 2 - 6 p.m. The ALS Association St. Louis Regional Chapter has been selected as a new participating charity with a portion of each sale being donated directly to our Chapter. Registration for the event will open soon, but to view information about previous events visit https://12barsofcharity.com/st-louis/.