ALS Ice Bucket Challenge Returning This August!

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The following is a press release shared by all the organizations in the North American network Collaboration for a Cure. The ALS Hope Foundation is proud to participate in Collaboration for a Cure and to be a part of the effort to bring organizations together in service of our common goal: to make a difference in the lives of people with ALS. We are announcing the Ice Bucket Challenge's return this August - and every August until a cure. Learn more by reading below and visiting www.alsicebucketchallenge.org!

 
 

Two ALS patients who co-founded the ALS Ice Bucket Challenge, together with 15 ALS organizations, announced today a collaborative effort to launch the Challenge again this August. The ALS Ice Bucket Challenge became a global phenomenon in 2014 and raised $220 million globally for ALS research and patient care.

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a progressive neurodegenerative disease that leads to paralysis, due to the death of motor neurons in the spinal cord and brain. There is no known cure for the disease. However, as a result of the ALS Ice Bucket Challenge in 2014 significant new investments in research on the causes of and potential treatments for ALS have been made.

Co-founders Pat Quinn and Pete Frates will kick off this year’s ALS Ice Bucket Challenge on July 31 in Boston. The two ALS patients, their families and a steering committee of nonprofits have been working together since last year and are putting the final touches on a special launch event. A dedicated website – www.alsicebucketchallenge.org – was unveiled today to inform people about ALS and the ALS Ice Bucket Challenge, and to make it easier for them to donate to an ALS organization of their choosing.

“Last year gave the ALS community hope for the first time in a long time,” said Quinn, who lives in Yonkers, N.Y., and was diagnosed with ALS two years ago. “But we still need the public’s help to keep the momentum going. We plan to do the ALS Ice Bucket Challenge again this August and every August until we find a cure.”

The ALS Ice Bucket Challenge is a viral video phenomenon that soaked the nation and the world for the first time in August 2014. A person dumps a bucket of ice and water over his or her head, challenging three friends to either do the same, donate to the ALS charity of their choice, or both. More than 17 million videos of people taking the challenge were posted on Facebook alone last year. These videos were watched by 440 million people a total of 10 billion times.

“The ALS Ice Bucket Challenge represents all that’s great about this country – it’s about fun, friends, family, and it makes a difference to all of us living with ALS,” said Frates, who lives in Beverly, Mass., and was diagnosed with ALS when he was 27 years old. “I am so proud that ALS organizations have come together to support me and my family and the whole ALS community as we unite to launch this year’s ALS Ice Bucket Challenge.”

All told, the ALS Ice Bucket Challenge led to more than $220 million in donations to ALS-oriented nonprofits, including some of those leading this year’s collaborative launch effort. Much of the donations raised by ALS nonprofits during last year’s challenge has already been invested or allocated to support new ALS research efforts, increased advocacy, and expanded and improved local care and services for people diagnosed with ALS, their families, and care providers.

This announcement represents the largest coordinated effort of ALS nonprofits to date, and many of the organizations hope to work more closely together not only on awareness and fundraising activities such as the ALS Ice Bucket Challenge, but also on providing crucial patient services and accelerating ALS research.

The ALSIceBucketChallenge.org website was created pro bono by TBWA\Chiat\Day in New York City.

Participating ALS Organizations: The ALS Association, ALS Canada, ALS Hope Foundation, ALS Therapy Development Institute, ALS Worldwide, Answer ALS, International Alliance of ALS/MND Associations, Iron Horse Foundation, Les Turner Foundation, Muscular Dystrophy Association, Prize4Life, Project A.L.S., Target ALS, Team Gleason, and The Robert Packard Center for ALS Research.

About TBWA\Chiat\Day: TBWA\Chiat\Day New York is part of the TBWA Worldwide network. TBWA Worldwide (www.tbwa.com) is a top ten ranked global advertising network that holds Disruption® at its core to develop business-changing ideas for the brands it works with. TBWA has 11,100 employees across 323 offices in 97 countries and also includes brands such as AUDITOIRE, BEING, Digital Arts Network (DAN), eg+ worldwide, The Integer Group®, TBWA\Media Arts Lab and TBWA\WorldHealth. TBWA’s global clients include Accenture, adidas, Apple, Energizer, Gatorade, GSK, Henkel, Kraft, McDonald’s, Michelin, Nissan, Pernod Ricard, Pfizer, Standard Chartered Bank, Singapore Airlines, Sotheby’s and Vichy. Follow TBWA on Twitter and Instagram and like us on Facebook.


 

Challenge Atlantic City

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On June 28, Mike McDevitt, the leader of Team #IMAGAINSTALS (@IMAGAINSTALS), participated in the Challenge Atlantic City triathlon. Mike completed a 2.4-mile swim, a 112-mile bike ride, and a 26.2-mile run. Congratulations on all of your hard work and training!

Mike raised over $4,000, and all the donations went directly to the ALS Hope Foundation in loving memory of his uncle, Dan Pellegrino (May 2, 1955 to November 21. 2014).

Thank you, Mike, for your commitment to fighting ALS! We are grateful for your ongoing support of the ALS Hope Foundation. 

 

ALS/MND Without Borders: Global Day 2015

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ALS advocates from across the globe celebrated June 21st as Global ALS Day. This was a day to educate the public about ALS (also called Motor Neuron Disease or MND in other countries) and bring hope to those affected by this disease worldwide.

This year, the ALS Hope Foundation proudly participated in a global social media campaign with the help of our many collaborators around the world and our friends at the International Alliance of ALS/MND Associations.

Organizations and advocates from across the world used the hashtag #ALSMNDWithoutBorders to raise awareness and highlight the ways that we are sharing resources and ideas across national boundaries to combat ALS and related motor neuron diseases.

Learn more about the campaign by browsing our Facebook and Twitter feeds, visiting the Alliance's global day page, and searching for the hashtag#ALSMNDWithoutBorders on Twitter.

Thank you to all who shared messages of hope and cooperation with us on June 21st!

 

The 14th Annual Research Update and Awards Luncheon

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The clinic team poses on the day of the luncheon; PHOTO CREDIT: ROBERT E. PATTERSON

The clinic team poses on the day of the luncheon; PHOTO CREDIT: ROBERT E. PATTERSON

On Sunday May 31st, The ALS Hope Foundation hosted its annual Research Update and Awards Luncheon at the Marriot Philadelphia West in Conshohocken. Close to 100 people from the ALS Hope Foundation community were in attendance, including PALS, their families,  the clinic team, advocates, and supporters.

Our guest speaker was Dr. Richard Bedlack, Director of the Duke ALS clinic and founder of ALS Untangled. Dr. Bedlack spoke to us about his latest research project on ALS reversals. There are rare instances in which a person with ALS stops progressing or even gets better. His clinic, along with 20 others worldwide have teamed up to understand these ALS reversals and, perhaps, make them happen more often with the help of clinical trials and the social network Patients Like Me. Dr. Terry Heiman-Patterson, President of the ALS Hope Foundation,  took the stage after him and explained the ALS Hope Foundation's newest programs and our most recent and exciting research projects.

After her update, Dr. Heiman-Patterson presented the awards. The Sunrise Award was given to Dan Pellegrino for having demonstrated the highest level of commitment to the ALS Hope Foundation by tirelessly supporting its mission and fundraising. Dan tragically lost his battle with ALS on November 21, 2014, but his dedicated family continues to support our efforts. They accepted this award on his behalf. 

several honorees pose with dr. heiman-patterson and the mda/als center of hope team; Photo Credit: Robert E. Patterson

several honorees pose with dr. heiman-patterson and the mda/als center of hope team; Photo Credit: Robert E. Patterson

The Courageous Heart Award is reserved for  those who have taken a proactive role in the fight against ALS, advocating for PALS and supporting the ALS Hope Foundation while courageously battling ALS themselves. Our Courageous Heart winners for 2015 were Dennis Casey, Sharon Corosanite, H. Todd Kelly, Denise Richards, and Karen Gallimore. We would like to again thank you for everything that you do to keep hope on the horizon! Your courage inspires us all. 

The Community Hope Award was given to Doug Fowler and to Ram Consulting in recognition of their outstanding support and dedication to the ALS Hope Foundation. Finally, the Extraordinary Honoree Award was given to Bernie Parent in appreciation for his service and dedication to promoting ALS awareness. His efforts and continued support are greatly appreciated. We also acknowledged our Horizon Honors, a title given to individuals or organizations who have helped to keep hope on the horizon by contributing or raising over $1,000 in 2015.

All honorees and speakers inspired everyone in attendance. May we all remember their courage and their dedication as we continue to keep Hope on the horizon!

 

Collaboration for a Cure

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The ALS Hope Foundation was honored to participate in the Collaboration for a Cure event on April 17, 2015. We at the foundation believe that partnership and cooperation are the only way forward! The statement below is a prepared release about the event shared with all those who were in attendance. Read and enjoy!

Thanks in part to last summer’s ALS Ice Bucket Challenge, the first Collaboration for a Cure took place on April 17, 2015, in Arlington, Virginia. Representatives from 18 organizations who are fighting amyotrophic lateral sclerosis (ALS) gathered to identify key areas where collaboration among their organizations could help drive forward collective efforts to help people living with this disease. One such attendee, Dr. Kevin Horton, Chief of Surveillance and Registries within the Division of Health Studies (pictured above), presented information about the National ALS Registry.

The invitation to this first meeting was to individuals at many of the leading ALS organizations. Patients who lead some of those organizations were invited. Although, none were able to attend, they were well represented by their chosen delegates. The group is committed to having people living with ALS and caregivers of people with ALS participate in future meetings and task groups. The following organizations were represented: ALS Canada, ALS ETF, ALS Hope Foundation, ALS Therapy Alliance, ALS Therapy Development Institute (ALS TDI), ALS Worldwide, Answer ALS, International Alliance of ALS/MND Associations, Iron Horse Foundation, Kevin Turner Foundation, Les Turner ALS Foundation, Muscular Dystrophy Association (MDA), Prize4Life,Project A.L.S., Target ALS, Team Gleason, The ALS Association, and The Robert Packard Center for ALS Research at Johns Hopkins.

The day began with a welcome from Barbara Newhouse, President and CEO of The ALS Association. While The ALS Association brought together this first meeting, it was acknowledged that future meetings will be convened and driven forward by the community of ALS organizations. Newhouse introduced the moderator for the day, Paul De Morgan, who has 16 years of experience in facilitating and mediating multi-party, consensus-oriented policy dialogues and site-specific dispute resolution processes.

After a full day of discussion (described below), there was near unanimous commitment to continue to support the collaborative into the future. While it was agreed to continue to discuss key issues pertaining to ALS as a group, it was acknowledged that the power of the meeting was in the diverse opinions and levels of experience. It was noted throughout the meeting that the focus must remain on the patient and finding solutions for their urgent needs. It was also unanimously agreed that despite the many diverse opinions, the participants were eager to work together if it meant immediate action.

Many areas need to be addressed, but for this meeting, three areas of focus were identified in advance to be topics of discussion. The first topic involved gaining consensus on the prevalence and incidence of ALS. The goal was to share detailed information of the known and unknown regarding current data and gain alignment in messaging regarding incidence vs prevalence. Individuals and organizations have used a range of estimates when describing the number of people living with ALS in the United States, from as few as 12,000 to as many as 40,000 or more. Representatives from the Agency for Toxic Substances and Disease Registry (ASTDR), including Kevin Horton, DrPH, MSPH, CPH, Chief of Surveillance and Registries within the Division of Health Studies, and Paul P. Mehta, M.D., Medical Epidemiologist, presented information on the National ALS Registry and its efforts to identify people living with the disease to better understand incidences and prevalence.

After a robust discussion among members of the group, it was determined that the data is not sufficient to support currently reported numbers of people living or diagnosed with ALS. The registry’s first report is based on one year’s worth of data. Although it is consistent with published literature, the organizations agreed that the first year data from the registry may have under-reported prevalence. Therefore, the organizations agreed that it was critical to work together to urgently explore options to enhance the registry. A task force made up of designees from the ALS organizations in attendance will join together to help accomplish that goal. Creating a strategy to foster enrollment through clinical experiences and also in patient and caregiver outreach are two areas agreed upon that need immediate improvement. It was ultimately agreed that all people living with ALS need to be counted and their medical voices heard through their critical data.

The second discussion of the day focused on the formidable challenges that exist to bring a new therapy to market and the development of a guidance document to help companies and researchers involved in ALS drug development navigate the regulatory process and speed drug development. Given that the U.S. Food and Drug Administration (FDA) does not have the resources to develop guidance documents for each disease, this group is unified in a commitment to assure the guidance document is not only produced but also reflects the recent community driven efforts. Resources from the ALS Ice Bucket Challenge are dedicated to that assurance. The initiative will involve participation from the entire ALS community: people living with ALS, ALS organizations, clinicians, researchers and partners in the industry. It will be governed by a steering committee comprised of content area experts who will chair individual working groups focused on specific chapters of the guidance document including, biomarkers, benefit-risk, clinical trials and outcome measures, natural history and diagnosis. The steering committee will also be advised by a patient and caregiver advisory committee to ensure patient input throughout the guidance development process. This will be the first patient-focused guidance for ALS product development that would be submitted to the FDA. And, it will be a consensus-based work product that incorporates stakeholder views in areas such as trial design, biomarkers, surrogate endpoints, patient-reported outcomes, benefit-risk and others.

The group fervently agreed to coordinate efforts to create a needed momentum for this important guidance. As part of this initiative, a communications plan will be included in order to provide the ALS community with timely input, updates and milestones.

Finally, expanded access was a topic of discussion and how ALS organizations can better communicate information about treatments in development. Because there is currently only one approved drug to treat ALS and given the devastating nature of the disease, there are often calls to support widespread access to therapies that have shown some promise in early stages of development. The FDA has a number of existing authorities that are designed to expedite the development and approval of new treatments and also provide access to those treatments, including outside of a clinical trial and prior to FDA approval. Those authorities include: expanded access; accelerated approval; fast track; priority review; breakthrough therapy designation; and orphan drug designation.

The conversation centered on educating attendees about these authorities as well as other related issues, such as “Right to Try” laws that have been introduced and enacted in states across the country. “Right to Try” laws seek to provide access to investigational therapies outside of FDA governed expanded access programs. The session also focused on how ALS organizations can communicate information about promising investigational treatments to people with ALS and how organizations can respond to calls for widespread access to those potential treatments.

The group recognized that ALS organizations can do more to explain the differences between the various FDA authorities mentioned above. Furthermore, the group acknowledged that people living with ALS have unique perspectives as it relates to the above options and should help guide organizations when they choose how to communicate opinions of a new therapy or treatment concept. It was recommended that a task force convene to discuss expanded access issues.

Those in attendance agreed that there will be future meetings for the Collaboration for a Cure and will immediately begin to work together to follow up on the various action items that were identified by the group.

One final note: the group was shown a video and letter from Pete Frates and Pat Quinn, co-founders of the ALS Ice Bucket Challenge, asking all the organizations to work together and follow their lead in order to make the event a success again in 2015 and the years to follow. ALS Association Chief of Staff Brian Frederick outlined for the group a collaborative Ice Bucket strategy that Pete and Pat are spearheading, which will be for the benefit of the entire ALS community. The message was well received and all agreed we are a greater force when working together.

 

Dr. Heiman-Patterson Receives ALS Association Clinical Management Grant

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Dr. Heiman Patterson and her collaborators at Massachusetts General Hospital have been awarded a Clinical Management Grant from The ALS Association to study strategies that help caregivers deal with cognitive changes in ALS. While ALS primarily affects the motor system, up to 40% of PALS experience cognitive impairment, and approximately 20% PALS show behavioral changes, predominantly apathy and disinhibition. These cognitive and behavioral changes add significantly to the burden and distress of caregivers who have now to face the challenges of managing behavioral changes in addition to the physical disability. The overall goal of our study is to characterize the relationship of caregiver burden to cognitive and behavioral impairment in ALS and to develop and perform a feasibility study of a pilot individualized intervention as a way to reduce caregiver burden. Ultimately, this study will provide the necessary background to develop, inform, and guide future targeted and larger scale interventions directed to both PALS and caregivers.