Dr. Stephen Senderoff: A friend from the beginning.

Dr. Stephen Senderoff was a strong supporter of the  ALS Hope Foundation and the MDA/ALS Center of Hope from the very beginning. He was a brilliant research scientist and accomplished musician. Over his 20 year battle with ALS, Stephen managed to put on on many events like "A Concert for Hope" at the Kimmel Center in 2010 for the benefit of the ALS Hope Foundation. We send our condolences to his wife  Patricia and his family. He was one of our Courage Heart recipients in 2013  because of his proactive  role in the fight against ALS, advocating for PALS and supporting the ALS Hope Foundation while courageously battling ALS himself.

"When a disease is curable, most doctors can administer the cure. When a disease has no cure, no one can cure you. But you can heal. The team led by Dr. Terry Heiman-Patterson at the MDA/ALS Center of Hope are master healers. They heal the incurable, and bring light and hope into a place of frightening darkness."

The 15th Annual Research Update and Awards Luncheon

On Sunday May 15th, the ALS Hope Foundation hosted its 15th Annual Research Update and Awards Luncheon at the Philadelphia Marriott West in West Conshohocken. Approximately 140 people from the ALS Hope Foundation community were in attendance, including PALS, their families, the clinic team, advocates, and supporters.

Our guest speaker wasDr. Wilson Bryan of the Food and Drug Administration (FDA) who gave a very comprehensive presentation  entitled "Drug Development: Taking Therapies into the Clinic." Prior to joining the FDA, Dr. Bryan was co-director of the MDA/ALS Clinic at the University of Texas Southwestern Medical School, and he brought this unique perspective to his work.

Watch the video of his presentation here.

Dr. Terry Heiman-Patterson, president of the ALS Hope Foundation, gave an update on the programs at the MDA/ALS Center of Hope, the research coming from the ALS laboratory at Drexel, and collaborations both nationally and internationally.

Dr. Heiman-Patterson then had the honor of recognizing people or organizations who have supported the ALS Hope Foundation throughout the past year. The Sunrise Award was given to Richard "Dick" Dayton for having demonstrated the highest level of commitment to the ALS Hope Foundation by tirelessly supporting its mission and fundraising. The Dayton family held a bowling event, showed up en force to the walk, were on the International Alliance of ALS/MND Associations March of Faces banner and were our Season of Hope ambassadors.  Sadly, Mr. Dayton lost his battle with ALS on December 8, 2015. His family still chose to be the face of our Season of Hope despite their loss and we are so beyond grateful for their support over the years.  His wife Carroll and many family members were there on his behalf. 
 

The Courageous Heart Award is presented to  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 recipients for 2016 were John Buzby,Gerald DeStefano, Rita Fezzuoglio, Karen Gallimore, Steven Bickley, Todd Kelly, Denise Richards, and William Snyder. We would like to again thank you for everything that you do to keep hope on the horizon! Your courage inspires us to live life to the fullest.

 Please read more about their Stories of Hope.   

The Community Hope Award was given to two outstanding communities who have shown a commitment to raising awareness and funds. The Media Theatre, Jeff Coon and Ramona and Frank Gywnn for recognized for their outstanding event "The Swingin' Concert for Hope," which raised over $57,000 and won the 2015 Broadway World Philadelphia Award for Best Special Event. The Borough of Brooklawn along with the MacAdams Familyand the Vitola Family received the Community Hope Award, in recognition of their outstanding support and dedication to the ALS Hope Foundation with their Tom MacAdams and Eileen Vitola Run/Walk and new this year, the Great Gatsby Gala. Eileen Vitola lost her battle with ALS on April 29th. Our hearts are with the Vitola family during this difficult time
The Borough of Brooklawn presented the ALS Hope Foundation with a check for $15,000.  In three years this little town of 2,000 people has raised $63,000.

We also acknowledged our Horizon Honors awardees, those individuals or organizations who have helped to keep hope on the horizon by contributing or raising over $1,000.

It was truly an inspirational and informative afternoon. We are grateful to have so many wonderful, dedicated supporters behind us. Thank you to our sponsors InFuCare RX, LifeSplice Pharm LLC, and an anonymous donor and  to everyone who helped make the luncheon possible! 

Dr. Wilson Bryan "Drug Development: Taking ALS Therapies into the Clinic."

Please enjoy our guest speaker Dr. Wilson Bryan's presentation from our Annual Research Update and Awards Luncheon on May 15th, "Drug Development :Taking ALS Therapies into the Clinic"

Dr. Bryan is the Director of the Division of Clinical Evaluation and Pharmacology/Toxicology, in the Office of Cellular, Tissue, and Gene Therapies, Center for Biologics Evaluation and Research, FDA.

Video by Robert Patterson

Drag Racing for Hope

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Debbie Andreocci was diagnosed with ALS on September 14, 1995 at Mt. Sinai Hospital in New York. Shortly after, she received a post card about the MDA/ALS Center of Hope at Drexel University and decided to see Dr. Terry Heiman-Patterson. They have been coming to the clinic from Clinton, New Jersey ever since. 

Debbie is a fighter. Not only is she a PALS, she is also a breast cancer survivor.  She never complains and is always there to help everyone around her. She is famous for her Eggplant Parmesan! Tony says she is the type of person who makes her life look easy. She has two amazing children and two beautiful granddaughters, Mia and Liana.

 Tony was inspired by the Ice Bucket Challenge to create his own way to raise ALS Awareness. With his upcoming retirement, Tony decided to put the ALS Hope Foundation logo on his race car and car trailer and pursue his racing career full time. He had previously won the NHRA Division 1 Englishtown Race in 2004. 

 Debbie and Tony have been married 42 years this upcoming Memorial Day weekend. Tony is going to reveal his car’s new look at the Maple Grove Speedway’s Lucas Oil Drag Racing Series May 26th to May 29th to celebrate his love for Debbie and his dedication to the ALS Hope Foundation. Several of his co-racers will also be sporting the ALS Hope Foundation decal on their cars.  The ALS Hope Foundation will be cheering him on Saturday May 28th! Come out and join us.

15 Years with the MDA!

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. 

Edward Jensen's Kilimanjaro Trek

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

NEALS Research Update with Dr. Terry Heiman-Patterson

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 Annual International Symposium on ALS/MND

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.

View the presentations here.

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.

To see an overview of the Scientific Meeting, here is Dr. Heiman-Patterson’s video from the ALSA/NEALS webinar.

Dr. Terry Heiman-Patterson receives the Forbes Norris Award

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. 

Click here to learn more about the International Alliance of ALS/MND Associations and the previous Forbes Norris Award recipients.