Welcome to the NJ Chapter Quarterly Newsletter!
Spring 2017

What you'll find in this issue:


Only TWO days left to register for the Jersey Shore 5K & Team Hope Walk on Saturday, June 3rd, 2017 at 8:30am in Belmar! Registration is $35 for runners and $25 for walkers (fee will increase $5 on Race Day), including a free buffet after the race at Bar Anticipation. The first 150 runners and walkers to register will receive a high performance t-shirt. 

Register now or donate to the event here.

HDSA NJ Chapter Meets with US Senator Corey Booker's Team

by Joe Cosentino, Corporate Outreach, NJ Chapter Board

For families affected by Huntington's Disease, this story may seem all too familiar. A patient is diagnosed with HD, denied disability benefits, and then, after reapplying and finally being approved, the patient must wait an additional two years to receive benefits. For those with early HD, this may not come as a surprise - outwardly, everything seems normal, how can one prove an inability to multi-task or the loss of memory? While this may be the process we've become used to, we will not accept it as the status quo. The fact is, during the two-year period where newly diagnosed HD patients are forced to wait for Social Security Disability Insurance (SSDI) benefits through Medicare, 1 in 25 will die, and many more will be forced to quit their jobs, or worse.

To ease the burden on HD families, the Huntington's Disease Society of America (HDSA), in conjunction with various members of congress, has advocated for the passage of the HD Parity Act. The bill would remove the mandatory two-year waiting period for HD patients to receive benefits after being approved. The act was brought before congress in 2015 and received bi-partisan support, earning co-sponsorships from more than half of the House and one-fifth of the Senate. While this was an impressive amount of support, it was not enough, and the legislation will be reintroduced to Congress next month.

Absent from the co-sponsor list were several Representatives from New Jersey, as well as Senator Cory Booker. Nancy Small, Chair of the HDSA NJ Chapter's Education and Advocacy Committee, pushed relentlessly for Senator Booker's ear on the issue and managed to secure a meeting with his healthcare team. On March 31, 2017, a team of volunteers from New Jersey met with Hanna Mori, Deputy State Director, and Bianca Madzarova, Projects Specialist, to share our stories and why we need Senator Booker's sponsorship of the HD Parity Act.

The volunteers included individuals living with HD, caretakers, spouses, and family members who have lost too many to the disease. We shared stories of lives taken too soon, life savings lost, and the uncertainty of one day being diagnosed as gene positive. Each individual exuded emotion, and tied their situation back to why the two-year waiting period is unacceptable. By the end of our meeting, we had the hearts of Hanna and Bianca, and felt that we made real progress towards getting Senator Booker's sponsorship. The last question that Hanna asked during the meeting was, "What is the purpose of this two-year waiting period?" To this, our group had no answer.

Apparently, a two-year waiting period is not uncommon for receiving a variety of disability benefits and is mandated as a cost-reduction measure. That said, exceptions have been granted for both Amyothropic Lateral Sclerosis (ALS) and End-Stage Renal Disease, as a result of similar advocacy efforts. In addition, the HD Parity Act has already received a provisional cost estimate from the Congressional Budget Office, and the projection, $150 million over the next decade, is small by the standards of a typical congressional bill. HDSA was not surprised to see this cost estimate come in so low, as studies have shown that providing health insurance to individuals during the waiting period should reduce Medicare spending on these individuals over the long-term.

HDSA NJ Community, we need your help! Call the offices of your Senators and Representatives and ask for their support! In 2015, sponsors included Senator Bob Menendez, and Representatives Bill Pascrell Jr., Leonard Lance, Rodney Frelinghuysen, Donald Payne Jr., Albio Sires, Christopher Smith, Frank LoBiondo, Scott Garrett, and Frank Pallone Jr.  Absent from this list are US Senator Cory Booker, and Representatives Donald Norcross, Tom McArthur, Josh Gottheimer, and Bonnie Watson Coleman.

The Chris Roland Story

by Ben Eisler, Newsletter Editor

Since the age of two, 29-year-old Chris Roland knew what he wanted to be when he grew up. "He used to dress up and make believe he was a fireman," says his mother Jeannine Roland, Volunteer Chairperson of the HDSA NJ Chapter Board of Directors.
Chris had a great uncle and two cousins that were FDNY, and every Sunday after mass, his grandfather would take him to visit firehouses. He would tour the trucks, put on gear, and talk to the firefighters. He spent weekends hanging around Rescue 5 and Engine 160 on Staten Island. "The guys took him under their wing," Jeannine says. "They were prepping him to be FDNY one day."
Chris was raised on Staten Island and moved to New Jersey in High School. He was an honor student, and at age sixteen joined the Fire Explorers apprenticeship program with the Old Village Fire Company. Two years later, in June of '06, he graduated from the Middletown Fire Academy and joined Station 11 as a volunteer. Shortly thereafter, changes began to occur that Chris always knew might come.
HD came from his dad's side. Chris was in 8th grade when his father went into a nursing home. His dad spent the next nine years there before passing away. Three of his father's five siblings have also passed from Huntington's Disease. And now Chris, who spent his life training to fight fires, is in the fight of his life.
Chris was majoring in criminal justice with a minor in fire science, but had to stop college. "He went from being an honors student to not being able to sit and focus," his mother says.
Today, he is legally blind, can't walk without assistance, and can't speak. But through it all, he has refused to let it get him down. "He doesn't complain. I mean never," Jeannine says. "It's courage. It's bravery."

Even after learning he had HD, Chris wanted to continue fighting fires; to keep helping people. He was the last person anyone could expect to keep giving of himself, and yet he kept giving. And while HD is too much for any one person to fight alone, Chris's tenacity has inspired countless others to join the fight - and that is the only way to defeat this awful disease.
Team Chris is consistently one of the state's top fundraisers, and will try to break its fundraising record again this year at the Edison Team Hope Walk on October 14th, "because we need a damn cure," Jeannine says.
Not long ago, the National Honors Society at Jeannine's elementary school (she is the Principal) held an educational event known as Pi Day in Chris's honor. Students got to throw pies at their math teachers if they raised $50. The kids rallied behind Chris, despite only recently learning of his story, and $5,800 went to the HDSA NJ Chapter.
Chris's relentless positivity also earned him a spot at Mets spring training last March, where he met nine players including Yoenis Cespedes and his personal favorite, David Wright. He took home Wright's bat, signed, as well as a game ball. "It was the most awesome hour and a half that he could have ever asked for. He just had a smile on his face from ear to ear," Jeannine says.
But the most remarkable moment came in the fall of 2015. That September, Chris achieved his dream. Due to his courage and bravery, the FDNY made him an honorary fireman. And he insists on fulfilling his duty.

"Every day, he wakes up, he's still a fireman," his mother says. "He puts on a shirt from one of the departments, still gets pages, still hears calls they go on at Old Village Firehouse. He is and I think always will be a member of that firehouse."
"It's bravery on a whole other level," Jeannine says. "And maybe that's what it was meant to be. He wanted to be a firefighter, he wanted to be brave and courageous and that's what this is. It's just not where he thought it was going to be."
Despite the many things the disease has taken from him, in a sense, Chris has won. Through it all, he has remained positive. And for other families fighting this disease, Jeannine has a message: "just don't give up."
Donations can be made in Chris's name to the HDSA NJ Chapter here

Healthwell Foundation

Huge news from HDSA - HDSA National has announced a partnership with The Healthwell Foundation to provide up to $10,000 in copayment or premium assistance for patients with Huntington's Disease!

The Healthwell Foundation is an independent non-profit. Its mission is to "reduce financial barriers to care for underinsured patients with chronic or life-threatening diseases." The organization recently launched a Movement Disorders Fund to assist patients in several different movement-related disease areas including HD, Tourette Syndrome, Parkinson's Disease, Chorea, Tardive Dyskinesia, and General Dyskinesia. Healthwell will provide $10,000 in copayment or premium assistance to individuals who have annual household incomes of up to 5 times the federal poverty level (the poverty level for each family size can be found here).

Please visit the   Movement Disorders Fund page for more information and the application. Click here for the full press release from HDSA National, with a quote from our CEO Louise Vetter!   

Rutgers Students Establish HDSA Club

Karen Petrin, Long-Term Care Community Advocate, NJ Chapter Board

Last year, students at Rutgers established an official club to support families with HD. Kylie Davidson, President of the Huntington's Disease Society of America at Rutgers University (HDSARU), is personally connected to the disease through her aunt. She felt there was a great opportunity to aid afflicted families, as Rutgers is a large school and students are looking for ways to give back.

Kylie posted information on Facebook to gauge interest, and the response was overwhelming. Forty students immediately replied saying they wanted to join the club. Kylie went through the approval process with both Rutgers and HDSA, and they were granted official club status in the Spring of 2016.

Since 2016, the students have volunteered at many HDSA NJ events, and even held their own independent fundraisers. They have given their time at JFK Hartwyck at Cedar Brook, a specialty care unit specifically designated for Huntington's Disease residents, as well as at the Jersey Shore 5K in October  2016 with their official Rutgers team. They have also held fundraising events on campus with three bake sales, and many will also register to run on June 3 at the Second Annual Jersey Shore 5K/Team Hope Walk.

Recently, the club elected new board members.  Officers for the upcoming semester are Kaylee Little, President, Jared Wolfe, Vice President, Kayla Strick, Treasurer, Sana Tahir, Secretary, Ananya Naythi, Social Media Promoter, and Elizabeth James, Social Chair.

The formation of this new club to assist Huntington's Disease, is a great example of human kindness.  The students have willingly made a choice to give up their time to help others.  All members should be commended for their dedication. The support they provide is key to spreading awareness and hopefully one day finding a cure. HDSA of NJ is very proud of its Rutgers students, sharing their time and talent for a worthy cause. They are a great asset to our community and a shining example for others to follow.

Inaugural Education Day for HD Families in Vineland, NJ

by Nancy Small, Secretary and Chair, Education and Advocacy Committee, NJ Chapter Board

The Advocacy and Education Committee of the HDSA NJ Chapter, in conjunction with Cooper University Hospital, held its first annual Education Day last February at the Vineland Library. The day included an array of talks and interactive experiences geared towards helping families with HD learn how to best cope with the disease.

Chapter President Ned Cancelmo opened the day with a warm welcome, and was followed by Dr. Andrew McGarry, a Cooper University neurologist, who spoke about the promise and challenges of Gene Editing, Antisense Oligonucleotides, and Small Interference RNA. Cooper is currently enrolling for clinical trial studies on mindfulness for the relief of anxiety and impulsivity, and D-Serine as a possible target to help with memory or cognition.

Kasey Young, a yoga teacher from The Balance Center, then took attendees through chair yoga poses and breathing exercises (see participants posing above), and Bridget Stearns of the National Youth Alliance spoke about her personal history with HD. Bridget was followed by Dr. Amy Colcher, Director of the Movement Disorders Center at Cooper, who outlined management strategies of HD, as well as safety issues and solutions for them. She noted that HD families often complain of under treatment by physicians and that there are options available that can substantially relieve symptoms and improve quality of life. 

A fun, interactive music therapy session was then provided by Adam Pearlstein of The Chateau Gardot Music Medicine Program at Rowan Univ. School of Osteopathic Medicine.  Nancy Small then provided a brief update on HDSA advocacy priorities, which include the passage of the HD Parity Act (see first article) and maintaining protections and coverage in the face of possible healthcare reform.

To close out the day, Robert Poserina, Jr., a tax and elder care attorney, spoke on the significance of having a Living Will, Power of Attorney, and a Last Will.  He also stressed the importance of long-term care planning, the differences between Medicare and Medicaid, and the gifting of assets.

Overall, the event was a huge success, and we were able to meet new families in the HD NJ community. Keep a look out for future education days! We hope to see you there!

Pope Francis Gives Special Audience to HD Community 

On May 18th, 2017, Pope Francis became one of the first world leaders to highlight the challenges of living with Huntington's Disease. Thousands gathered with him at the Vatican in Rome, to raise awareness and reduce stigma around HD. The event was partially inspired by the plight of families in Latin America, which includes the Pope's native Argentina.

HDSA representatives in attendance included President and CEO Louise Vetter and Senior Director of Mission & Scientific Affairs George Yohrling. Learn more and watch a video of the event at the  official website here

Breaking the Silence - One Story at a Time (*Minor Spoilers*) 

by Nancy Small, Secretary and Chair, Education and Advocacy Committee, NJ Chapter Board

There's nothing more powerful in our quest for a cure for Huntington's Disease than to tell our personal stories.  In the brave new documentary, "Her Mother's Daughter," Kathi O'Donnell, a widow to HD, tells her family's story with grace and courage despite her recent loss of her daughter Meghan to Juvenile Onset HD (JHD), and being caregiver for her son Joey with HD and her granddaughter Alyson with JHD. 
Kathi joined forces with filmmaker, Rae Maxwell, and producer, HDSA, to shine a light on the devastating impact of HD.  The film allows us to experience her humanity and courage as well as her unconditional love for her beloved family.
The documentary was aired at the New York Institute of Technology Auditorium in Manhattan on the evening of May 11, 2017.  A large and devoted band of HDSA staff and HD families and friends were in attendance, including Kathi, Rae and Kathi's granddaughter, Alyson. The audience was stunned into silence as the movie opened with footage focused on JHD and progressed through the O'Donnells living their typical everyday lives.  We witnessed Kathi and Alyson visiting with Kathi's daughter and Alyson's mom, Meghan, in a care facility. We viewed them at their home in Florida where Alyson veered from gleefully getting the mail and swimming in the backyard pool to "running away" down the quiet neighborhood street in frustration and anger.
The O'Donnell's story left us in tears, yet also in awe, of Kathi's strength and resolve.   In the Q&A session following the film, Kathi shared her passion for raising the awareness of JHD and HD and finding a cure. The film highlighted not only the struggles of the family, but the joys and love that are so much a part of every day life in all families, including those dealing with the sad realities of HD and JHD.  They are like us and we are like them, connected not only by HD, but more importantly, by our humanity.
Thank you to the O'Donnell's for making the effort, digging deep to find the strength and energy to bring us this beautiful, heart-wrenching, love-filled film about one family's life severely impacted by JHD and HD.

Dr. Fiona Gupta, Movement Disorders Expert

Dr. Fiona Gupta of Hackensack University Medical Center's Movement Disorders Center will speak at a Northern NJ Support Group this summer. The meeting will take place on June 20th at 7pm, at Saint Clare's Hospital in Boonton Township. To attend, RSVP to mail@fayegregory.com.

Dr. Gupta is the principal investigator on multiple clinical trials. In addition to treating patients with Parkinson's disease, Dr. Gupta specializes in treating essential tremor, focal and generalized dystonia, Huntington's disease, and spasticity resulting from cerebral palsy, stroke, or multiple sclerosis. She has been featured on CBS News, The New Jersey Network, WWFM radio, and in other print media.

First New Drug in a Decade Approved to Treat Symptoms of HD

In early April, the FDA approved the first new drug in a decade to treat symptoms of Huntington's Disease. The medication, Austedo, is considered an improvement upon existing treatments, notably Xenazine/generic tetrabenazine, used to treat chorea. Compared to Xenazine, Austedo can be taken in lower doses, and fewer times per day. There is also hope that Austedo will have an improved safety profile, though both Austedo and Xenazine come with black box warnings of an increased risk of depression and suicidal thoughts.

It is unclear what the new drug will cost, but there is hope that more competition will drive down prices in the market for HD medications. For more information, see press releases from HD Buzz here and Teva Pharmaceuticals, the manufacturer of Austedo.

Teva is a National Sponsor of HDSA and supports our three largest signature programs - Team Hope, Celebrations of Hope, and Education Days. The NJ Chapter is working closely with Teva to maximize our partnership - be on the lookout for Teva at future HDSA events!

NOTE:  Please consult with your physician for prescribing advice.

Have a story to tell? Have feedback on the first Quarterly Newsletter? Want to be part of our NJ Chapter Newsletter Team? We're always looking to add talent!
Email joeycos56@gmail.com with questions or comments. 

Special thanks to Kendra DeSimone, Newsletter Designer, and Maria Cosentino, Copy Editor.