ALS Advocacy Day 2016 Report

As I arrived on a beautiful Mother’s Day in Washington, D.C., I saw familiesNC DelegatesCapitolBldg enjoying picnics around the Washington monument.  It was a perfect day to enjoy the
Washington Mall and I wish I had more time to tour the monuments.  I was in our nation’s capitol to ask Congress to support legislation that will help people living with ALS and attend the National ALS Advocacy Day Conference.
This year we focused on 3 pieces of legislation: 1. Enact the Dormant Therapies Act,  2. Preserve Access to Complex Rehab Technologies (CRT), 3. Waive the 5 Month Waiting Period for Social Security.
I will explain these three below, but first I want to share just how poignant the experience is of meeting 1,000 people who have all been affected by ALS. The conference, led by ALSA, brings together people with ALS (PALS), their families, caregivers, those who have lost someone to ALS, and those who work to help PALS.  This affords the opportunity to meet people from diverse backgrounds with a common cause.
I met PALS whom I could not tell had an ALS diagnosis, and those who were using a ventilator to breathe.  I met Randy Floyd, who has the familial form of ALS, and he has lost over 20 family members to Lou Gehrig’s disease.  He gave a powerful plea for help to our representatives. Randy knows his daughter has a 50% chance of being diagnosed with ALS and just the thought of this possibility brings him to tears.  Randy and his entire family are positive, but they believe a cure for ALS is long overdue.  I met Brian, who also has familial ALS, and his wife Wendie Hager. They have three children and they share the same fears as Randy.
RepWalker
 Brian and Wendie Hager share their ALS story with Representative Mark Walker (Left)

We listened together to scientists present the latest in ALS research and how we can lobby our representatives to support these initiatives:

1. Enact the Dormant Therapies Act:  There are many drugs that have weak or expired patents that could help PALS.  This Act would extend these patents and make these drugs potentially profitable.  Without the possibility of profit drug makers have no incentive to proceed with testing.  The Dormant Therapies Act would help take these drugs “off the shelf” and back into the testing lab where they could possibly improve, prolong, and ultimately save lives.
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 Senators Thom Tillis and Richard Burr (Left to Right) with stacks of our petitions to support ALS related legislation.
 2. Preserve Access to Complex Rehab Technologies (CRT):  This legislation would help keep costs low for necessary wheelchairaccessories.  For example: with the progression of ALS, PALS need wheelchairs that can recline and raise the leg rests.  The Centers for Medicare and Medicaid scheduled to significantly reduce the payments for these accessories on January 1, 2016.  These have been delayed by Congress for 1 year but the issue is not resolved. If a permanent solution is not achieved these accessories will not be covered and many PALS will not be able to afford these much needed wheelchairs. Raising the legs and reclining elevates the legs and aids circulation which helps prevent blood clots.  A blood clot is life threatening and can lead to death or several days in the hospital.  A cost benefit analysis suggests these accessories are not “bells and whistles.” Wheelchairs with these functions are necessary and they can decrease long term care expenses for PALS.
After our visit Senator Richard Burr and Representative David Rouzer Co-sponsored this legislation!
 
3. Waive the 5 Month Waiting Period for Social Security: After a PALS has been approved to receive Social Security Disability Insurance (SSDI) they have to wait 5 months before they receive their benefits.  They have paid into social security their entire professional career, but they cannot receive any payment and many have no other form of income.  This waiting period is used to determine if there is a misdiagnosis and to prevent fraud.  A diagnosis of ALS is made by a process of elimination of other diseases. Therefore there are very few misdiagnosis of ALS and the waiting period is unnecessary.
Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced S. 2904, the ALS Disability Insurance Access Act, to waive the five-month Social Security Disability waiting period for people living with ALS. Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced H.R. 5183, identical legislation in the House of Representatives.
 
Senator Richard Burr Co-Sponsored this bill after meeting with us!
Thank you for supporting The Joe Martin ALS Foundation.  We are encouraged by our representatives responses and we will continue to advocate for families fighting ALS! 

Take Care,
Neil Cottrell
President
The Joe Martin ALS Foundation

Caregiving Workshops

2016 May Caregiver Workshop Flier

Our next caregiving workshop will be on May 2, at Myers Park United Methodist Church. There will be two sessions, 2-3PM and 6-7PM. These workshops will be led by Neil Cottrell, Joe Martin ALS Foundation President. Topics will include, but are not limited to: lifting and transferring techniques, communication methods, proper use of durable medical equipment, and range of motion and exercise basics.  Neil will share tips and advice from his experience in helping people with ALS (PALS).  Caregivers and PALS will have the opportunity to ask questions and share what they have learned as well.  Please call 704-332-1929  or emailneilcottrell@joemartinALSfoundation.org to RSVP.  

Charlotte Says YES for ALS!

Charlotte says Yes 4 ALS Banner Photo

 

Join us for this free event to raise funds for The Joe Martin ALS Foundation and the ALS Association! We’re saying YES to life with ALS and YES to a cure!

This event is free to the public. You will have the opportunity to learn more about what we do as an organization and donate to help us continue our mission. You can donate at the event or online here: http://joemartinalsfoundation.org/index.php/donation

Sponsorships are also available! See below for levels and information.

 

SPONSORSHIP INFORMATION

 

Platinum Sponsor: $1000

 

– Company Name and logo featured on all promotional materials, media press releases, Foundation newsletter and online promotions.

 

– Company Name and logo prominently featured on all event signage and event tote board.

 

– Company logo placed on event goody bags for guests

 

– Feature article on company on website and social media outlets

 

– Verbal recognition throughout the event including plaque presentation and opportunity for remarks at event

 

– Opportunity to bring product, company promotional items and demo equipment to event.

 

Gold Sponsor: $500

 

– Company Name and logo featured on all promotional materials, media press releases, printed materials, Foundation newsletter and online promotions.

 

– Company Name and logo featured on event signage and tote board

 

– Verbal recognition throughout the event

 

– Opportunity to bring promotional items to be included in goody bags for guests.

 

Silver Sponsor: $250

 

– Company Name and logo featured on event signage and tote board

 

– Verbal recognition throughout the event

 

– Opportunity to bring promotional items to be included in goody bags for guests.

 

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___ Yes! Sign us up as a Sponsor for the Charlotte Says YES for ALS event!

 

Company Name: __________________________________________________________

 

Contact Name: ___________________________________________________________

 

Address: ________________________________________________________________

 

Phone: _________________________________ Website: ________________________

 

Facebook URL: _____________________________ Email: ________________________

 

Sponsorship Level: ___ Platinum ($1000) ____ Gold ($500) ____ Silver ($250)

 

___ Please Send Us an Invoice                                                     ___ Payment Enclosed

 

Contact: Sarah Hayden, The Joe Martin ALS Foundation – joemartinalsfoundation.org

100 N. Tryon St, Suite 3420, Charlotte, NC 28202, 704-332-1929 – sarahhayden@joemartinalsfoundation.org

 

ALS Panther Super Fan!

Kevin Clay isn’t letting ALS stop him from going to the Super Bowl to cheer for his Carolina Panthers!  Kevin has been a season ticket holder for 20 years and he and his wife, Melinda, aren’t going to pass up the chance to see the panthers take home the Lombardi trophy.  The Joe Martin ALS Foundation helps Kevin and Melinda every week in their fight with ALS and we are proud to help them plan their trip to the Super Bowl!  Watch their WBTV interview here:

http://www.wbtv.com/story/31093303/man-with-als-making-one-last-trip-to-super-bowl

#IBC2015

2015 Ice Bucket

Donate Here: ALS  ICE  BUCKET  CHALLENGE

About the Challenge:

Take the Ice Bucket Challenge and help fight ALS!  Many of our supporters are taking the challenge to raise ALS awareness and funds to fight this disease. Participants willing to pour a bucket of ice water over their heads “challenge” or “nominate” their friends to do the same and make a donation.  Most people record a video of the dousing and post it on Facebook.  It’s cool, fun, and contagious! Please be sure to include #JMALSFIBC2015 and #EveryAugustUntilACure in your post.

Take the challenge and encourage your friends to do the same or make a donation by going to:http://joemartinalsfoundation.org/index.php/donation

Please include IBC in the comment box when you make an online donation.

What the Ice Bucket Challenge did in 2014:Screen shot 2014-12-17 at 10.28.11 PM

The foundation is applying donations from the Ice Bucket Challenge to increase our services to people fighting ALS.  We are now dedicating over 100 hours per week of free home care to help families live with this disease.  We have also launched a new service!  Caregiving Workshops will train caregivers and provide in-home demonstrations to help families care for their loved one. This would not be possible without your contributions. Thank YOU for making a difference!

See Jim Martin take the Ice Bucket Challenge! Click the image below to watch the video on WBTV.com:

JimIceBucket