Ice Bucket Challenge Progress

 

CHAPTER NEWS

THANK YOU TO EVERYONE THAT ATTENDED THE WALK TO DEFEAT ALS®

Thank you to the 500 participants who joined us for the Springfield Walk to Defeat ALS in Southwind Park and to the 4,500 participants who joined us for the St. Louis Walk to Defeat ALS in Forest Park. We have raised more than $150,000 of our $175,000 goal in Springfield and more than $400,000 of our $430,000 goal in St. Louis. The Walk websites for St. Louis and Springfield are still taking donations until November--don’t forget to ask your employer about matching gifts. Please remember to RSVP for our Walk Awards Celebration on Wednesday, August 8, 2018 from 6 p.m. to 8 p.m. at Kirkwood Station Brewing Company to Natalie Pottebaum at npottebaum@alsastl.org by August 1st.

RESEARCH AND EDUCATION

PARTICIPANTS WANTED AT WASHINGTON UNIVERSITY

Washington University is looking for people with ALS willing to participate in research studies and clinical trials.

A new study examines how living in St. Louis affects people’s experiences living with ALS and other neuromuscular diseases through interviews, focus groups, and shadowing daily activities. Participants will receive a $50 gift card. For more information contact Chelsey Carter at crcarter@wustl.edu or call 314-479-7410. The Answer ALS research study looks into a better understanding of ALS and identification of future drug targets. Participants will provide standard clinical measures including strength testing and breathing function and a blood sample for creation of IPSCs, a unique part of this study. For more information contact neuroclinicalstudies@email.wustl.edu or call 314-362-6159.

Interested in other ALS research opportunities? View the list of observational studies and therapeutic trials available at Washington University.

FACEBOOK LIVE PRESENTATIONS

Thanks to a generous educational grant from Cytokinetics, we're bringing the ALS community three Facebook Live presentations this summer. The second presentation in the series is scheduled for Monday, August 13 at 11 a.m. EDT. Tune in with Dr. David Walk, associate professor and director of the ALS Certified Treatment Center of Excellence at the University of Minnesota, as he addresses respiratory and bulbar function and how to maximize quality of life and independence. Watch the previous presentation!

PASSING OF PCHETA: WHAT THIS MEANS FOR ALS PATIENTS AND FAMILIES

The Palliative Care and Hospice Education and Training Act (PCHETA) will increase the palliative care training received by primary care physicians, nurse practitioners, and other medical related professionals. In many cases, these professionals are already providing this type of care, but this act will provide the training necessary to hone in on skills related to the sub-specialty that is hospice and palliative care.

For pALS and their families, this means having additional members of their health care team that are better equipped with the knowledge and skills necessary to care for those battling devastating diseases like ALS. We are hopeful that PCHETA will make palliative care more accessible to patients residing in more rural parts of Missouri and Illinois.

ENROLL IN THE NATIONAL ALS REGISTRY

Learning more about ALS is an important step in the battle to defeat it. The National ALS Registry collects, manages and analyzes data about people with ALS to help researchers learn more about who gets ALS and what causes it. When people with ALS include themselves in the National ALS Registry, they're including themselves in the national effort to end ALS. Register at www.cdc.gov/als.

VISIT OUR BLOG ALS-CONNECT

Subscribe to our blog for personal ALS stories, information on ALS research and advocacy, interviews by ALS doctors, and tips on how to live a life with ALS as comfortable as possible. We have a new post every week—our latest post features a personal story from Heather Burns, our care services team manager. View all of our posts at https://als-connect.org/.

CHAPTER EVENTS

KEEP YOUR EYES ON THE PIES AND REGISTER FOR 5KIMMSWICK

Keep your eyes on the pies and join us for the 8th annual Kimmswick 5K (5K run and 1-mile walk and fun run) on Saturday, August 18th! 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). The Blue Owl's famous Levee High Apple Pies will be awarded to the top overall male and female finishers, and fresh fruit pies will be awarded to the top three in each age group. Hang around post-race for attendance prizes, refreshments, a 50/50 raffle, music, shopping in Kimmswick, and more! Visit the website to register or make a donation.  Questions or need help signing up? Please contact Andrea Flanigan aflanigan@alsastl.org 314-432-7257 ext. 231

SWING FOR A CURE GOLF TOURNAMENT

Big changes are happening for this year’s Swing For a Cure Golf Tournament. This year is the 23rd year for the event and we are making the switch to Sunset Country Club! This year’s golfers will be able to enjoy a round of golf at this exclusive private club with all this amenities. Join us on Monday, August 20th for a day of fun, sun and golf for this worthwhile cause of empowering persons with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.You can register and find out more information online at http://alsa-stl.org/golf_tournament. Not a golfer? You can purchase tickets to our dinner auction only or purchase tickets for our Florida vacation or sports raffle--participants need not be present to win.

Thank you to our sponsors Permobil, The Friends and Family in Memory of Wayne Barber, Sr., Aero Charter, Graybar, GFI Digital, Barber Murphy Group Inc., Heffernan Insurance Brokers, RN Services of St. Louis Home Health LLC, John Rothkof and St. Louis Trust Company.

ICE BUCKET BASH

The Ice Bucket Bash is a fun, energetic party that puts St. Louis celebrities in the cold seat – taking the ice bucket challenge on stage to raise money for the ALS Association – St. Louis Chapter. It is a fun night of cocktails, dinner, a live auction and ice bucket challenge Fund the Need. For more information on sponsorship or tickets, please contact Andrea Flanigan aflanigan@alsastl.org 314-432-7257 ext. 231.

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:

Benton American Legion/VFW ALS Ice Bucket Challenge
Saturday, August 4, 2018
Benton American Legion/VFW (311 S. Main St., Benton, IL 62812)
For just a $50 donation, you or a nominee can get dunked by a tractor full of ice water to help support people with ALS and their families. This is a great opportunity to build awareness and raise funds for the ALS Association! For more information, please visit http://bentonvets.org or call VFW Commander Gary Fravel at 618-923-2710.

Southern Illinois Golf Tournament for ALS
Sunday, August 5, 2018
4 person scramble on Sunday, August 5th at Egyptian Country Club (4880 US Highway 51, Mounds, IL) with 8 a.m. and 1 p.m. tee times. All proceeds to help fund respite care for pALS in Southern Illinois. Food provided by Huckleberry’s. For more information on how to sign up, please contact Andy Clarke at 618-745-6412 or jandyclarke@gmail.com.

Pullin' for ALS
Friday, August 17 & Saturday, August 18, 2018
Visit their website for more information and like their facebook page to be notified of updates and new events all year long.

The Glo Run Night Race - St. Louis 5K & 10K
Friday, August 17, 2018
Missouri Runs and All Community Events present the Glo Run Night Race at Forest Park – The Muny on Friday, August 17th. There will be a 5K and 10K tracks with registration and packet pick up starting at 6:50 p.m. and the race officially starting at 8:20 p.m. A proceed of the proceeds for to the ALS Association and volunteers are still needed to help – if interested in volunteering, please reach out to Michelle Reynolds Gray at 314-432-7257 ext. 224 or mgray@alsastl.org. For more information on how to register, packet pick-up, etc., you can visit http://missouriruns.com/theglorunstlouis.

ALS Awareness Night at Rent One Ballpark - Southern Illinois Miners
Saturday, August 25, 2018
We will be at Rent One Ballpark on Saturday, August 25th for the 6:15 p.m. for ALS Awareness Night. There will be a pre-game walk around the field, an ALS information booth and much more! For more information and to purchase tickets, please contact Lori Dobbs at 314-357-3267 or ldobbs@alsastl.org.

Hot Cider Hustle 5K
Saturday, November 3, 2018
Missouri Runs and All Community Events present the Hot Cider Hustle in Forest Park The Muny. Packet pick-up and registration begin at 7 a.m. and the race getting underway at 8:05 a.m. A portion of the proceeds go to the ALS Association along with when you use coupon code RUN4ALS (10% of your registration fee to go back to us). Volunteers are still needed to help if interested in volunteering, please reach out to Michelle Reynolds Gray at 314-432-7257 ext. 224 or mgray@alsastl.org. For more information on how to register, packet pick-up, etc., you can visit https://missouriruns.com/stlouishotciderhustle.

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 Andrea Flanigan at 314-432-7257 x8 or aflanigan@alsastl.org to get started.

Please like us on Facebook and follow us on Twitter to receive the latest updates about Chapter events, breaking research news and public policy happenings!

Save the Date for the 21st Annual Memorial Golf Tournament and Dinner Auction

 

This year The ALS Association St. Louis Regional Chapter is celebrating the 21st Anniversary of the Annual Memorial Golf Tournament and Dinner Auction.  The 2016 event will be held Friday, August 26, at the Norman K. Probstein Golf Course in Forest Park.  Join us for a day of fun, sun and golf for this worthwhile cause of empowering persons with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.  Registration begins at 10:30 am and there is a noon shotgun start.  For more information you can visit our golf website at www.alsa-stl.org/golf_tournament.