The Muscular Dystrophy Association teamed up with our clinic in 2001, making this our 15th year as the MDA/ALS Center of Hope. This incredible partnership has been extremely beneficial to PALS and their families. We would like to thank the MDA for being our partner and helping us keep Hope on the Horizon.
We are always so thankful when people donate, fundraise and volunteer to help us accomplish our mission. There have been so many special, and creative fundraisers over the past 15 years. That being said, this has got to be one of the most unique we have ever had the pleasure of calling our own!
On September 15th 2016, Edward Jensen and his oldest daughter Alex will be embarking on a 9 day adventure to reach the summit of Mt. Kilamanjaro in Africa, the tallest free standing mountain in the world. The goal is to raise $10,000 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.
He is requesting support and sponsorship. 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
Click here to watch Dr. Patterson's NEALS Update Webinar. This Webinar reviews the latest research developments from the Annual NEALS meeting and ALS/MND Symposium.
The 26th International Symposium on ALS/MND was held in Orlando, Florida this December and it was a week filled with the sharing and exchanging of experience and information. The Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations holds these meetings annually and the ALS Association was the host of this year’s event. The ALS Hope Foundation was privileged to have representatives at each of the meetings throughout the week.
The International Alliance of ALS/MND Association meeting is the first of the week and brings together associations from around the world. Twenty-three different countries were represented at this year’s meeting, with six organizations from the United States in attendance. Dr. Sara Feldman is a member of the Board of Directors and is on the Program Committee for the meeting. Dr. Terry Heiman-Patterson and Jackie Nicodemo also represented the ALS Hope Foundation during the two-day long meeting. The presentation themes this year included Fundraising and Strategies; Allocation of Resources; Challenges to Providing Services; Services, Programs and New Ideas to Support PALS; and Partnership, Mentorship and Collaboration. Following the opening remarks and General Meeting lead by the Chairwoman, Carol Birks, MND Australia, there was an introduction of new members, which included China, Columbia, Cuba, India, and Russia. There are now over 30 countries with member organizations in the Alliance.
The Ask the Experts follows the Alliance meeting, and this year it was led by Dr. Lucie Bruijn, the ALS Association’s Chief Scientist, and the panel included Dr. Rick Bedlack from Duke University and ALS Untangled, Dr. Michael Benatar from the University of Miami, and Dr. Ammar Al-Chalabi from King’s College in London.
Watch a video of the Ask the Experts session here.
The Allied Professionals Forum is a day-long educational program and is held the day in between the Alliance meeting and the Symposium. The ALS Hope Foundation has supported the APF since 2003 and Sara Feldman was honored this year to take on the role of Co-chair after being on the Program Committee for several years.
The program committee strives to create a program that is informational and relevant, and this year was another successful event. This day is an opportunity for Allied Health Professionals from around the world to share their experience and to network with other professionals from around the globe who are also trying to make a difference in the lives of people living with ALS and their families.
Click here for an overview of the APF Presentations.
Click here to view the APF presentations on YouTube.
Day one of the Symposium began on Friday, December 11, 2015. The Symposium begins and ends with joint plenary sessions, then is divided into parallel tracks, one scientific and one clinical, for each session. Over 800 people, including neurologists, scientists, health professionals, association members, and PALS/CALS, attended the three day event and interacted in a dynamic way that seems unique to this meeting. Dr. Terry Heiman-Patterson attended the scientific presentations and Sara Feldman and Kelli Smith attended the clinical.
Dr. Matthew Kiernan, Last year's recipient, presents the Forbes Norris award to Dr. Terry Heiman-Patterson.
During the Joint Opening Session of the 26th International Symposium on ALS/MND in Orlando, Florida, December 11, 2015, Dr. Terry Heiman-Patterson was recognized by her peers with the Forbes Norris Award. The award was presented by last year's recipient, Dr. Matthew Kiernan.
"Dr. Terry Heiman-Patterson has been working in ALS/MND care and research for more than 30 years. She established and still directs one of the largest and most comprehensive ALS/MND clinics in the world, the MDA/ALS Center of Hope at Drexel University College of Medicine. In this role, she sets an example for all clinicians through her unwavering optimism, respect for patient autonomy and responsiveness to their needs. Through her research, she has improved our understanding of SOD1 mouse models, non-invasive ventilation, nutrition in ALS/MND and biomarkers. She continues to be a thought-leader in this field, with major national and international roles at ALS Untangled, the National ALS Research Group, the Northeast ALS Consortium and the International Alliance of ALS/MND Associations.
Above all, Dr. Heiman-Patterson is the type of neurologist that everybody with ALS/MND should wish to have as a doctor, and the type of role model to whom we should all aspire. She is a highly accomplished physician and scientist who has retained her compassion for people with ALS/MND, while also contributing to the scientific pursuit of new insights into the causes and treatments of this disease. She does all of this with a degree of modesty and humility that often belies her razor-sharp mind. She is a truly worthy recipient of the Forbes Norris Award."
The Forbes Norris Award, first presented in 1994, honors the memory of Dr. Forbes "Ted" Norris (1928-1993), a neurologist dedicated to helping people with ALS/MND. The purpose of this prestigious Award is to encourage advancement in the management and understanding of ALS/MND, to the benefit of people living with the disease worldwide.
A sweet "thank you" goes out to the Countryside Elementary School of Mt. Laurel, NJ! They dedicated the proceeds of their October 1st Ice Cream Social to the ALS Hope Foundation. This terrific group raised $1,200. Thank you to the PTO, especially organizer Gina Pierce, and all the families who made the ice cream social so much fun for such a great cause!
The COuntryside Elementary PTO joined by Jackie Nicodemo, director of communications at the als hope foundation
Clearwater Beach, Florida was the site of the 14th Annual Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) Meeting on November 4-6, 2015. Dr. Terry Heiman-Patterson and Sara Feldman, PT, DPT, attended the conference along with scientists and clinicians from many of NEALS' 120 member sites. NEALS is committed to cooperative planning and open scientific communication between organizations looking to develop care and treatment of individuals with ALS.
Dr. Heiman-Patterson is Co-Chair of NEALS along with Dr. Jonathan Glass from Emory University in Atlanta, Georgia. In addition to co-leading the meeting, Dr. Heiman-Patterson is also Co-Chair of the Biorepository Committee with Dr. Robert Bowser of Barrows Institute in Phoenix, Arizona. She also led the abstract reviews for this year’s meeting.
Physical Therapist at the MDA/ALS Center of Hope, Sara Feldman, PT, DPT, is Co-Chair of the Physical Therapy Committee along with Peggy Allred, PT, DPT, from Cedars-Sinai in Los Angeles, California. They presented the work the Committee has done over the past year and discussed new areas of interest for clinical research. They presented a poster on “Equipment Utilization in the ALS/MND Population-Trends and Timing.”
The meeting agenda included training sessions for the outcome measurements taken during clinical trials, a review of ongoing NEALS trials, and information on other research initiatives occurring at member sites.
It was both an inspirational and thought provoking meeting and we left with renewed energy and new collaborators to move the research forward.
The ALS Hope Foundation would like to thank everyone who made our 8th Annual Hope Walks for ALS a success! To all those who joined, formed and donated to our teams; our volunteers; to the families who came out; to our Hope Ambassador, Bernie Parent; to our volunteers; and to our clinic staff: This event would not have happened without your dedication and support!
Thank you again to our generous event sponsors: Medpro RX; The Levine Family; Karen and Scott Tarte; Morgan Stanley; Arthur Jackson; Reino's Design Print Mail; Scott Furman Re/Max; Klehr, Harrison, Harvey Branzburg LLP; and MH Capital.
Thank you also to those who made in-kind donations to help us with food, services, supplies, and raffle items: Nicky's Auto Body Restoration; Mainline Pizza; Insomnia Cookies; Herr's; Martin's Potato Chips; Pepsi; Hatfield; Federal Pretzel;Tri-State Public Adjusters; Costco; Wegmans; Target; ShopRite; Pizonka, Reilley, Bello & McGrory, P.C.; and Plymouth Ambulance Service.
Our vendors were amazing and our face-painter, balloon artist, and DJ were fabulous!
We are already excited about next year. Thanks for an amazing day! If you didn't get a chance to support your team, you can still make a donation on the Walk site.
See the ALS Hope Foundation Facebook page for more photos!
Photos by Robert E. Patterson
On October 10, the Bryn Mawr Running Club held its 9th Annual Bobtoberfest. This race along Kelly Drive is characterized by the Oktoberfest theme with race staff dressed in traditional German festive clothing. There was a fun, German-themed post-race party at the Bachelors Barge Club (Boathouse #6).
All proceeds from the race benefited the ALS Foundation in honor of former BMRC club president Tom Corrigan. Thank you, Bryn Mawr Running Club and everyone who made Bobtobefest a great event! See you next year.
The ALS Hope Foundation is a non-profit corporation under section 501(c)(3) of the US Internal Revenue Code EIN 23-3010389
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Address for Tax ID: P.O. Box 40777 | Philadelphia, PA 19107
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Original build by Rachel Patterson
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