ALS Ice Bucket Challenge Progress

 

CHAPTER NEWS

CARE SERVICE COORDINATOR TERRITORIES

As you have read on our blog and elsewhere, we welcomed two new Care Service professionals to our team last fall. Adding these two professionals has allowed us to reorganize the way we assign Care Service coordinators to patients. We have reassigned the Care Service coordinators based on the territories outlined on the map you can find here. Patient families were contacted by the Care Service coordinator for their area before the end of 2019.

We realize that change can be disruptive. We also know that reorganizing the way patients and families are assigned gives the opportunity for the Care Service coordinators to provide more personalized and focused attention. As always, please reach our to your Care Service coordinators or the Care Service leadership with for any needs or concerns.

CHILDREN'S MATERIALS FOR FAMILIES BATTLING ALS

Thanks to a grant from the St. Louis Blues for Kids 14 Fund, we were able to purchase healing activity books and educational materials to provide emotional support to children who reside in families who are battling ALS. The goal for these materials is for children to receive timely and age-appropriate activity books and materials that will help them navigate their loss. The materials are aimed at allowing children to identify and cope with their feelings surrounding the impending death and/or death of a loved one. If you would like to request materials please contact Anna Zelinske at 314-432-7257 ext 237 or azelinske@alsastl.org.

EXTRA HANDS FOR ALS CLUB RECIEVES OUTSTANDING YOUTH IN PHILANTHROPY AWARD

In November, our friends at John Burroughs Schools and the Extra Hands for ALS club were awarded Outstanding Youth in Philanthropy by the Association of Fundraising Professionals St. Louis Chapter for their incredible work in our community and helping families with ALS. We are thrilled to see them receive this award and applaud them for all they've done for people with ALS!

RESEARCH OPPORTUNITY

Quinnipiac University is conducting research on people who have been diagnosed with ALS. The study aims to understand the impact occupational therapy (OT) has on the quality of life of people with ALS. They are seeking participants who have been diagnosed with ALS or a non-paid caregiver that cared for or is currently caring for an individual with ALS. The entire study will be conducted online. Questions can be directed to the primary investigator and faculty advisor for this project, which is Anna Norene Carlson who can be reached at anna.carlson@quinnipiac.edu. You may also contact the chair of the Quinnipiac University IRB, Dr. Richard Feinn at Richard.feinn@quinnipiac.edu. The survey link is https://www.surveymonkey.com/r/alsquestionnaire.

CHAPTER EVENTS

MARK YOUR CALENDAR FOR THE 2020 WALK TO DEFEAT ALS®

ST. LOUIS

Saturday, June 27, 2020 | Forest Park

Join us on June 27, 2020 for the St. Louis Walk to Defeat ALS presented by Dowd Bennett. This year we have a goal of raising more than $450,000 and we know it is a goal we can accomplish together. Our current totals stand at over $40,000 and we are excited for fundraising to ramp up! 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.

SWING FOR A CURE GOLF TOURNAMENT

For the 25th Anniversary of this event we are making some BIG changes. Save the date for the 2020 Swing For a Cure Golf Tournament to be held at Glen Echo Golf Club on Friday, August 21. Our tournament was awarded the special privilege of being able to play at one of St. Louis’s oldest private clubs on a Friday. We are currently looking for volunteers to join our golf planning committee. Contacting Natalie Pottebaum at npottebaum@alsastl.org or 314-432-7257 ext 230 for more information.

5TH ANNUAL ICE BUCKET BASH RAISES OVER $375,000

It was an incredible night at last year’s Ice Bucket Bash at the Marriott St. Louis Grand. A special thank you to everyone who supported this event and helped us raise over $375,000, especially our celebrity dunkees: Stephen Hale, Jason Isringhausen, Debbie Monterrey, Chris Zimmerman, and Lynn Hogan!

And a huge thank you to our presenting sponsors: World Wide Technology and The Steward Family Foundation; and event sponsors: Centene Charitable Foundation, Sam and Marilyn Fox Foundation, Emerson, Edward Jones, Keeley Companies, Aero Charter, The St. Louis Cardinals, Washington University in St. Louis School of Medicine, and Villa Lighting.

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.

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 Elizabeth Roe at 314-432-7257 ext. 226 or eroe@alsastl.org to get started.

Each month, we bring you the latest news from our Chapter here in eNews, but if you are curious to know more about what is happening day-in, day-out, follow us on social media. We are active on Facebook, Twitter and LinkedIn, so if you aren’t already, follow us for more updates on events, advocacy, research, and the latest from our blog ALS Connect. And if you are already a follower, let your friends and family know where they can find us.