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The July Newsletter
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President's Message by Dr. Terry Heiman-Patterson

                   

  

While summer vacation time is upon us, these are hardly the “lazy days of summer.”  I am thrilled to be able to update you on so much exciting news in the ALS world. When I began my career more than 30 years ago, we had no trials, no leads, and few people interested in the problem of ALS. Our community of committed researchers and clinicians has grown and progress is real. The news this summer is evidence of  the growth in our knowledge and hope for people living with ALS!

To begin, BrainStorm cell therapeutics has released eagerly awaited news regarding the double blind randomized Phase 2 trial of stem cells in 48 people with ALS performed at three US Centers.  The stem cells were administered either into the muscle (IM) or into the spinal fluid spaces (IT or intrathecal). Participants were evaluated for three months before treatment and then at 2,4,8,12,16, and 24 weeks after treatment.  The treatments were safe and well tolerated. In addition, there was an evaluation of efficacy based on the change in the slope of Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) score, change in breathing tests (SVC) and change in muscle strength before and after treatment. The percentage of responders were compared between treated and control groups. Responders demonstrated less decline in the slope of change in the endpoints. Across all definitions of "responder" and at all except one timepoint studied, a higher percentage of NurOwn-treated subjects were responders compared to placebo. As a clinician and researcher, I am eagerly awaiting the peer reviewed publication.

We are also excited about the start of Amylyx Pharmaceuticals phase 2 trial funded by the ALS Association and ALS Finding a Cure later in the Fall of 2016. This trial will evaluate AMX0035, a combination of two drugs, sodium phenylbutyrate (PB) and tauroursodeoxycholic acid (TUDCA), which have been shown to exert synergistic neuroprotective and anti-infammatory effects in disease and cell models. Both were shown to be safe and tolerated in previous ALS clinical trials with some preliminary evidence of efficacy. The upcoming trial will examine not only safety but functional outcomes. Importantly there will also be an analysis of biomarkers that reflect cell function along with neuronal damage and inflammation. 

Finally, Iron Horse Diagnostics has announced a licencing agreement with Euroimmun Medizinische Labordiagnostika to launch the first marketed ALS diagnostic test. This test, based on phosphorylated neurofilament and complement c3 proteins in the spinal fluid has been shown to be more than 90% accurate.  The company is also validating a blood test for the diagnostic markers. If successful, this test would allow for earlier diagnosis which is critical to enable earlier therapeutic interventions.

Yes, there is major progress and Hope is clearly on the Horizon!




A robotic arm controlled by a joystick? A mouse you move with your head and click by biting on a switch? A power mount for your eyegaze system? These amazing concepts were actual devices at the “Promoting Access to Assistive Technology” conference put on by RESNA (Rehabilitation Engineering and Assistive Technology Society of North America) and NCART (National Coalition for Assistive and Rehab Technology). Sara Feldman, Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope, attended the conference that was held in Arlington, Virginia, and was both amazed and inspired by the event. “This is a really great conference for people interested in Assistive Technology. The ideas and solutions presented range from what technology is available now, some awesome modifications to current technology, and prototypes of what is coming in the future. The attendees included end users of the technology, clinicians that are utilizing the technology in their clinics, researchers and engineers working on moving the technology forward, and manufacturers and suppliers who are truly concerned with delivering a robust, reliable product.  There was definitely a tangible air of excitement that was infectious.”  Watch for updates to our Assistive Technology page coming soon!

Click here for or a more detailed report of the conference and links to the remarkable technology Sara learned about.
 

A Night at the Media Theatre: Featuring the Musical '13'

July 23, 2016 at 7:00 pm


The Media Theatre Company has partnered with the ALS Hope Foundation for another fantastic evening of talent, music and HOPE. 



"13" has something for anyone between the ages of 12 to adult as we are taken in by the humor, heart, and message of the production. For adults, "13" is similar in style to "You're A Good Man, Charlie Brown." Both shows examine life through younger eyes and minds, but "13" is from an older perspective.


We are excited to announce  that special guest Jillian Shea Spaeder of Disney XD’s "Walk the Prank” will be our hostess for the evening! She will also doing a meet and greet to benefit the ALS Hope Foundation from 5:45 pm until show time.



Jillian recently visited the MDA/ALS Center of Hope where she learned about the ALS Hope Foundation's mission, met our clinic and lab staff and met one of our PALS, Tim Heiser and his wife Jen.

"I'm so glad I was able to spend a few hours at the ALS Hope Foundation and meet such inspiring people. I'm proud to help support this incredible organization".



 


Tickets are $20 and include a $5 donation to the ALS Hope Foundation.
Please use the code "ALS Hope" when purchasing tickets 


*an anonymous donor will be matching all ticket donations*

 

 For tickets call the

Media Theater Box Office 610-891-0100

or purchase online
  http://mediatheatre.org
  

5:45 pm: Meet and Greet with Jillian Shea Spaeder
7:00 pm: '13' The Musical
9-10:30 pm: Post Show Reception


For more information about the Musical '13' and the Media Theatre please visit  http://mediatheatre.org 

Someone I Love Has ALS 


Jodi O’Donnell-Ames is the Executive Director and Founder of Hope Loves Company, the only nonprofit in the United States dedicated to supporting the children and grandchildren of PALS - People living with ALS. She is also the author of “The Stars That Shine”, a children’s book that gently introduces ALS.
 

"Appropriately, a joint effort between the ALS Hope Foundation's Terry Heiman-Patterson,  her wonderful team and Jodi O'Donnell-Ames. together  they penned SILHAS  with caregivers and carers in mind.  Dr. Terry Heiman Patterson, neurolgist and head of  the MDA/ALS Center of Hope in Philadelphia, as well as the President of the ALS Hope Foundation, contributes her more than thirty years of ALS experience to the book's pages and gives helpful information on the science of ALS and ways to receive the best treatment.  Terry Heiman-Patterson (and her wonderful team) took care of Jodi's late husband Kevin with genuine compassion and professionalism".

All proceeds from the sale of this guide for ALS caregivers will benefit the ALS Hope Foundation and Hope Loves Company.

You can purchase the book at the MDA/ALS Center of Hope or 


Purchase an ALS Hope Foundation shirt, tank top or sweatshirt from Booster.com to help us reach our goal of 100 shirts by July 28th!
Fundraise for our mission and spread ALS Awareness!

Click on the picture below!


Painting for Hope

Please join us Thursday, August 11th, from 7-10pm! 

This paint 'n sip class in East Norriton features step-by-step instructions to help you create a fun amateur painting on a 16x20 stretched canvas.  We will be painting the peacock featured above. You are welcome to bring your own food, drinks, snacks and desserts.  We will provide paper plates, utensils, cups and ice!
The painting will be completed within 3 hours with many breaks for refilling your drinks!

Time: 7-10pm, please arrive 10-15 minutes early to fill your cup, fill a plate and grab an apron!

Tickets: $45 per person, paid through our secure website. We can also accept cash at entrance- please let The Untapped Artist Studio know ahead of time if you will be paying cash.

Click here to purchase tickets!
All ages are welcome, however you must be 21 (ID enforced) to consume alcohol!
Supplied: All art materials and tools, excellent art instruction, aprons, ice, cups, paper plates, napkins, plastic utensils, wine openers.
Bring: Your favorite snack or beverage (alcoholic or non)! 
Location: 
316 E Johnson Highway, East Norriton, PA 19401
(484) 322-5228 or info@theuntappedartist.com

Macy's Shop for a Cause

 

Friday, August 26, 2016 to Sunday, August 28, 2016
We are selling $5 savings passes for Macy's stores nationwide. The savings passes can be used at any Macy's store in the country starting Friday August 26th and ending August 28th. The entire $5 purchase price will be given to the ALS Hope Foundation. With the savings pass, you will get exciting discounts and savings.

Save 25% all weekend long on regular, sale & clearance items, including home, you’ll even save on most brands usually excluded! Save 10% on electrics/electronics, watches, furniture, mattresses, and rugs/floor coverings.
You can also enter to win a $500 Macy's gift card. 

Purchase your pass in person at the MDA/ALS Center of Hope, or contact us to purchase an e-pass at info@alshopefoundation.org or 215-568-2426.

 


Edward Jensen's Kilimanjaro Trek      

 

 On September 15th 2016, Edward Jensen and his oldest daughter Alex will be embarking on a nine day adventure to reach the summit of Mt. Kilamanjaro in Africa, the tallest free standing mountain in the world!  Their goal is to raise $25,000 for the ALS Hope Foundation. Edward has been involved in organizations and groups seeking to develop a potential therapy for ALS for a number of years.  By undertaking this trek they hope to raise funds for further research and, ultimately, discovery of a treatment or cure!

He is requesting support and sponsorship toward this goal. Edward would like  everyone to know that he is self-funding the cost of the trip and all proceeds will go directly to the ALS Hope Foundation.

To learn more about what this very exciting journey will entail, and to donate or sponsor, please visit his First Giving fundraising page at  http://www.firstgiving.com/fundraiser/edward-jensen/kilimanjaro

 

Registration is officially open!!



Sunday, October 2, 2016
Valley Forge Military Academy Track and Field
1001 Eagle Rd 
Wayne, PA 19087

Click here for the official Hope Walks website to register, join a team or sponsor!


We can't wait to see all of you there!



Do you shop on-line? Amazon Smile is an easy way to shop and give to the ALS Hope Foundation at the same time! Every time you purchase an eligible item, Amazon will donate 0.5% of the price to the charity you choose. You still have full access to your usual features including Prime if you are a member.
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