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Our June-July Newsletter
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President's Message

Terry Heiman-Patterson, MD
 
Spring is my favorite season with the change in weather, the longer days and flowers signaling new life. This Spring was even more special as it also represents a rebirth of Hope to all of us who have been touched by ALS. For the first time in 20 years, we can celebrate  the FDA approval of a new drug that may slow the course  of ALS,  Radicava.  Radicava will be available in August, and all of us who care for people living with ALS are working hard to be prepared to initiate treatment as soon as possible. This new drug works by reducing oxidative stress and will be given intravenously. While the Japanese clinical trial that showed benefit included only a group of people with early ALS, its design was purposeful in order to be able to see an effect within 6 months. This does not necessarily mean that Radicava will only help people early in the disease.

At the Center of Hope, we are also preparing for the start of several new clinical trials with renewed hope that more medications will be available to treat ALS in the near future. We will be initiating clinical trials for a number of compounds including Amx0035, CY 5022, Acthar, and Masitinib. You can read about these on the ALS Hope Foundation's website (
www.alshf.org). We will also be participating in two large, multi-center studies to collect clinical information and samples of blood, urine and spinal fluid. This is critical not only to developing new ways to diagnose and follow disease in people living with ALS but also to developing  individualized ALS treatments for the future - precision medicine.

Finally, we are also feeling the growth and strength in our Center as we add new staff to help complete our team. By next month, we will have a new nurse coordinator, another research coordinator, nutrition specialists and mental health support in the clinic. Yes, this Spring bloomed with Hope and we are looking forward to a great summer!

16th Annual Research Update and Awards Luncheon

The 16th Annual Research Update and Awards Luncheon was held at Philadelphia Marriott West on May 7, 2017 providing an afternoon of hope for PALS, their families and friends of the ALS Hope Foundation. We want to thank everyone who came together to make this special event a success again this year. Part of our mission is to provide educational resources and Dr. Lyle Ostrow from Johns Hopkins University presented an excellent overview of the research that is currently taking place toward a treatment or cure for ALS. Dr. Terry Heiman-Patterson added a discussion about the importance of collaboration and cooperation in ALS research and care. She also gave us an update on her current clinical and basic research initiatives at the Temple University Neurosciences Research Lab. 

The program then turned its focus on thanking our supporters and to acknowledge the hard work they do every day to help fight ALS. Our Horizon Honors awardees are individuals or organizations who have helped keep hope on the horizon by contributing or raising over $1,000 and promoting ALS awareness. We are so grateful for these individuals and organizations who are the backbone of our organization! This year we will add 38 names to the plaque!

The Community Hope Award, in recognition of outstanding support and dedication to ALS Hope, was granted to MT Pharma America, who sponsored our inaugural Gala of Hope in January as well as Temple University Hospital, who welcomed the MDA/ALS Center of Hope with open arms back in December. We cannot thank them both enough for their dedication and generosity!

The Promise of Hope Award was presented to Rose Coyne (NEPA 5K for ALS), Frances Fitzgerald (High-Five for Heiman-Patterson) and Jillian Spaeder (Media Theatre Company Event "13, a new musical"), young persons who have shown a level of commitment that goes well beyond their years.

Our Courageous Heart Award, a special award given to those who have taken a proactive role in the fight against ALS, supporting PALS and ALS Hope, while courageously battling ALS themselves. They are truly amazing ambassadors. Debbie Andreocci, Steven Bickley, Karen Gallimore, Ashok Gaur, Ed Gruin, Todd Kelly and Denise Richards give us hope every day with their positivity and courageous spirit. See their stories of Hope here.

The Sunrise Award, for those who demonstrate a high level of commitment to supporting the ALS Hope Foundation and our mission,  was given to Dr. Jeffrey Kramer and Dr. Eliot Dunsky, two individuals who are determination to live life to the fullest with ALS and who have embraced ALS Hope. They have not only battled this disease, but have advocated for PALS and supported the ALS Hope Foundation every step of the away. We commend them for their enduring spirit and thank them for their hard work and dedication!

We concluded the Luncheon with a look back over the past year. There were so many wonderful events and activities from the past year including our 9th Annual Hope Walks for ALS, the Out and Back Party Run, as well as many more runs, walks, and special event nights. We also would be remiss without mentioning our Inaugural Gala of Hope which we have confirmed will be returning in January! We are so thankful for all of our supporters and contributors from the past year and we are always astounded by their high level of commitment and drive to find a cure for ALS and to make sure PALS have the highest quality of life possible. Together, we keep hope on the horizon!

If you would like to get involved with any of our upcoming events including Hope Walks for ALS, or you have an idea for your own fundraiser, please contact Mara at mara@alshopefoundation.org. As a small, local organization, we rely on the support from volunteers like you to propel us toward our goal of defeating ALS. 

Assistive Technology Corner

3D printing a custom joystick for a wheelchair? Turning on your lights just by asking Alexa? Smart communities that can tell you where handicapped parking is located and available? These are just a few of the ideas that are becoming reality that were presented at the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) annual conference. RESNA 2017, AT Innovation Across the Lifespan was held in New Orleans June 26-30, 2017.  Sara Feldman, PT, DPT, is an Assistive Technology Professional and attends the conference as part of her certification and to learn about the technology that is not only available today, but also on the horizon for the future. The attendees include Rehab Engineers, PTs, OT, SLPs, researchers, suppliers, end users and other individuals working with assistive technology.

There are different tracks designed to appeal to people's areas of interest, and Sara focused on the environmental control and computer access classes. To read more about the conference including links, click here.
 
One highlight of the meeting for Sara was the presentation of an Honorary Fellow Award to Steve Gleason, a PALS and former Saints player, for his work in moving assistive technology forward. Blair Casey accepted on his behalf, and spoke passionately about the difference AT can make in the life of someone with ALS.
 
Steve Gleason continues to fight so every PALS has access to Speech Generating Devices. The current bill moving through Congress is known as the Steve Gleason Enduring Voices Act of 2017. 
 

June 21st is Global ALS/MND Awareness Day 

 
 June 21st marks Global ALS/MND  Awareness Day  every year and this year's  campaign was Cheers to a  World Free of  ALS/MND. 

 Alliance members and collaborators around  the world raised a glass and challenged  others to do the same to show their support  of persons with ALS/MND and each other to  find a cure. 

 The "cheers" photos were shared on social  media with the #ALSMNDWithoutBorders to  raise awareness of ALS/MND and to  highlight the ongoing partnerships in the Alliance community. The event showed the power of the international community in creating collaborative partnerships to help fight ALS. You can learn more about the International Alliance of ALS/MND Associations on their website.

California Pizza Kitchen Fundraiser was a Success!

On Thursday, June 15, the ALS Hope Foundation held a day long fundraiser at the California Pizza Kitchen in Plymouth Meeting to support the Joshua Tkachuk Memorial Fund. The fund supports the MDA/ALS Center of Hope at Temple University Hospital. The event was a resounding success, with 20% of each check's proceeds going directly to the fund. We raised over $200 from the day, all thanks to people like you who chose to dine out for a cause! 

We will be doing another fundraiser in early October so be sure to check back for the dates and join us! Thank you for helping keep Hope on the Horizon! 

Join the MDA and ALS Hope Foundation for a special seminar on topics related to ALS

It is our 10th Annual Hope Walks for ALS!

Registration is now open for our 10th annual Hope Walks for ALS!
This year, we are moving to a new venue, Temple University's Ambler Campus.
Register today to start fundraising and make a difference in the lives of people with ALS! 
Sign up for form a team, join a team, register as an individual or volunteer! Want to take it a step further? Consider one of our many sponsorship opportunities. Thank you for keeping Hope on the Horizon!


The Temple University MDA/ALS Center of Hope is located at:
Boyer Pavilion, 5th Floor
3509 N Broad St
Philadelphia, PA 19140
Convenient Valet Parking is available at the lobby of the Boyer Pavilion

Contact Benedicta Leon at 
 215-707-8457 for an appointment.
Fax 215-707-8235

 
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Click on the link below to check out how easy everyday hero can be in helping you help others! 
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