Christopher and Dana Reeve Foundation Quality of Life Grant

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We are pleased to announce that the MDA/ALS Center of Hope has received a Christopher and Dana Reeve Foundation Quality of Life Grant, which will be used to upgrade our Assistive Technology Resource Center. The Resource Center was started in 2006 to provide individuals with ALS and their families with education and access to communication and other forms of technology in order to increase independence and quality of life. This new initiative is specifically targeted to meet the needs that our PALS at the Center identified as most important, specifically cell phone access, computer and iPad access, and environmental control. These grant funds will help with the purchase of programmatic equipment. 

 

PODCAST: Filming My Father

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Rachel Patterson, General Manager of the International Alliance, and Jacquellyne Hengst, Director of Development for the ALS Hope Foundation in Philadelphia, sit down for a chat with Liz Tucker, producer of the new ALS/MND documentary Filming My Father. 

Press play to listen to the interview!

 

 

Watch the Filming My Father: In Life and Death trailer on YouTube: 

Make sure to like and follow Filming My Father: In Life and Death on Facebook!

Thank you to everyone involved for spreading awareness!

 

The 25th Annual Symposium On ALS/MND

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Sara Feldman, Clinical Liaison for the ALS Hope Foundation and Physical Therapist at the MDA/ALS Center of Hope, presents during the 2014 ALS/MND Meetings in Brussels

Sara Feldman, Clinical Liaison for the ALS Hope Foundation and Physical Therapist at the MDA/ALS Center of Hope, presents during the 2014 ALS/MND Meetings in Brussels

The 25th Annual International Symposium on ALS/MND was held in Brussels, Belgium, December 2014. Terry Heiman-Patterson, MD, and Sara Feldman, PT, DPT, attended the conference, which was put on by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations.  ALS Liga Belgium was the fantastic host of the event.

The ALS Hope Foundation is a member of the International Alliance of ALS/MND Associations, and Dr. Feldman is on its Board of Directors.  The Symposium began with the 22nd Annual Meeting of the Alliance of ALS/MND Associations December 2 and 3, 2014. This meeting is a chance for organizations from around the world to come together and share ideas. The day began with presentations by various members on fundraising, advocacy and awareness and, of course, the discussion began with the Ice Bucket Challenge. Every organization was impacted by the donations and the awareness the #IBC raised. Efrat Carmi (IsrALS) reported the top link clicked on the IsrALS website was “What is ALS?” Rob Goldstein (ALS TDI) led the inital discussion, but everyone was eager to share his or her own organization’s story.  We then heard from several other members on their activities this past year. The discussions then turned to challenges to providing services and national ALS/MND registries. We heard an update on the partnerships supported by the Alliance then adjourned for the day. The evening dinner was highlighted by a musical performance by Alper Kaya (Turkey MND Association) and his daughter. The presentations continued on the second day with several reports on services and programs offered by member organizations and then ended with a scientific and research update by Dr. Leonard Van Den Berg (ALS Netherlands), including information on Project MinE. In addition to presentations, working groups were formed to address a variety of issues related to the Alliance. 

Click here to scroll through the archives of the Alliance Meeting and download each presentation.

Click here to read a full synopsis of the Alliance Meeting from ALS TDI.

The Ask the Experts session followed the Alliance Meeting and brings together people living with ALS/MND and invited speakers for a question and answer session. Individuals who were unable to attend the meeting could also submit questions by email. The speakers this year were Dr. Orla Hardiman (Ireland), Professor Leonard Van Den Berg (Netherlands), and Dr. Lucie Bruijn (USA).

Click here to watch video of the Ask The Experts Session.

The 12th Annual Allied Professionals Forum brought together more than 180 health care professionals from around the globe for a day to share information and network on December 4, 2014. The ALS Hope Foundation has supported the APF for more than 10 years, and Dr. Feldman is a member of the Program Committee. Presentations covered a range of topics including ideas for clinical management of symptoms and FTD, helping staff deal with compassion fatigue, end-of-life issues and electronic options for communication and education. Dr. Feldman presented "Equipment Utilization in the ALS/MND Population: Trends and Timing" (click for video). 

Click here to watch video of the 2014 Allied Professionals Forum, click here.

Click here to read more about the Allied Professionals Forum.

The 25th International Symposium on ALS/MND then ran from December 5-7, 2014 and brought together more than 900 scientists, people living with ALS/MND, clinicians and association members. The symposium runs two sessions simultaneously, the scientific and the clinic tracts, and at times a third tract on biomarkers. The scientific themes included RNA processing and dysregulation, protein misfolding and toxicity, autophagy, in vitro modeling, cell biology and pathology, genetics and genomics, murine models, modulating SOD1 toxicity and non-neuronal cells. The clinical sessions included the themes of diagnosis/prognosis, trials and trial design, assistive technology, care practice, epidemiology, end of life decisions, respiratory management, nutritional assessment and management, and cognitive changes. 

During the poster sessions, Dr. Terry Heiman-Patterson presented her poster “Application of a Staging System to the ProACT Database Population” with co-authors Anahita Deboo, MD, Saugat Dey, MD, and Guillermo Alexander, PhD. Dr. Feldman presented a poster on “Equipment Utilization in the ALS/MND Population: Trends and Timing.” Her co-authors include Peggy Allred, PT, DPT, from Cedars-Sinai in Los Angeles and Jillian Moraveck, a Biomedical Engineering student at Drexel University.  

The week-long meetings ended with an ongoing commitment to the ALS/MND community and knowledge that there is further work to be done. 

 

The Ice Bucket Challenge: Where Do We Go Next?

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Dr. Terry Heiman-Patterson, photographed by Robert X. Fogarty

The Ice Bucket Challenge underscores how just a few people can make a huge difference! Thanks to Pete Frates and Pat Quinn, this challenge—and the ALS cause—has gone viral, and now this “orphan” disease is recognized worldwide.

Some have criticized the Ice Bucket Challenge for being frivolous. But here it is, $100 million later, still going strong, with donations being made to worthy ALS organizations all over the country. Through the generosity of our supporters, the ALS Hope Foundation has raised $60,000, and the influence of the ALS awareness that has been raised through celebrity and media participation is incalculable.

The new surge in funds generated by the Ice Bucket Challenge has the potential to turn the tide toward real treatment and a cure for ALS. But how should the funds be spent? How can we use this money responsibly and effectively, with the most impact?

It would seem to me that we have to think about how to help people living with the disease today while also preparing for a better tomorrow through research. In the here and now, we have a moral obligation to optimize the care and treatment of people already living with ALS (PALS), and to provide much-needed support to their families and caregivers.

The best way to provide that help to PALS today is through the support of multidisciplinary clinics—making it easier for committed physicians to run their centers and to deliver state-of-the-art care and technology. We also need to support the additional functions related to research that clinics provide, including collection of clinical data and tissue specimens and the establishment of dedicated ALS research labs at local centers. This will pave the way to real progress in research. This is why raising funds for local centers through organizations like the ALS Hope Foundation as well as donating to national organizations is so important. People with ALS should have access to the best care and research opportunities out there, no matter where they live.

We also need to spend funds to apply the technologies already available to the physical and communication needs of people with ALS so that they can be more independent and remain connected to their families, friends and communities. We need to advocate for insurance reimbursement for commercially available devices, and we need to support the use and development of technologies not yet commercially available but effective. These technologies need to be expanded and new technologies developed to open the world not only for PALS, but all people with physical disabilities.

We need to continue to support networks of clinical ALS centers that are uniformly trained and experienced in ALS clinical trials and clinical research like the network built through the Northeast ALS Consortium (NEALS). NEALS has the infrastructure to design and implement efficient, well designed trials for any promising treatment that may come to light through research with widely distributed access for PALS in the US through more than 100 member ALS centers.  We need to work to accelerate the time it takes to get an idea from the laboratory bench into the clinic since clinical research is critical to progress in solving ALS. This clinical research must be done with the utmost care and accuracy.

We also need to educate PALS and keep PALS and families engaged in the process as the stakeholders. We need to ensure that we consider the needs and wishes of PALS and join with them in advocacy to mandate the best care, research and the rapid deployment of potentially efficacious treatments to the clinic.  

Finally, we need to invest in research. What we do NOW will affect all that is to come.  We need to better understand all the causes of motor neuron death in ALS and the complex genetics of the disease so that we can design treatment strategies that will make a real and tangible difference to people affected by ALS. This means funding not only established investigators, but new ideas, collaborative research, and innovative thinkers. We need to make sure that everyone with an idea has the opportunity to pursue it, that funds are used judiciously but also across many labs that work together, building on each other’s strength, sharing results and ideas, and allowing discourse and reduces redundancy. The research community must be accountable not only to funding agencies, but most importantly to PALS.

The urgent need of people living with ALS is palpable and THE TIME IS NOW . . . to advocate, to  spread awareness, to continue  raising funds to support clinical care and research,  and to find treatments that lead to a cure . . . so that people living with ALS can look to the future!!!

Sincerely,

Dr. Terry Heiman-Patterson, President 

 

ALS Hope And Friends: Ice Bucket Challenge!

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The ALS Hope Foundation pulled together our team from the office, clinic and lab and headed for Love Park on Thursday to complete the #icebucketchallenge to raise funds and awareness for ALS. Every person you see dumping the bucket on their heads is dedicated to making a difference in the lives of people living with ALS and their families! We couldn't be prouder of this team - bringing research, care, and education together!

 

Bernie Parent, Flyers hockey hall of famer and supporter of the ALS Hope Foundation, took the challenge in our honor! Thanks Bernie! 

Click here to see Bernie get iced!

Action News anchor, Cecily Tynan, completed the ice bucket challenge as well! Can't wait to see the rest of the AccuWeather team take the plunge. 

Check out Cecily's video here!

Monica Malpass and Rick Williams accept the challenge!

See their response!