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Patient-Centered CHARCOT-MARIE-TOOTH SUMMIT 1 Welcome Letter 2 Schedule 4 Event Speakers and Panelists 32 Abstracts/Research Studies

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Patient-Centered CHARCOT-MARIE-TOOTH SUMMIT 1 Welcome Letter 2 Schedule 4 Event Speakers and Panelists 32 Abstracts/Research Studies NEW YORK CITY, THURSDAY, OCTOBER 6, 2016 Patient-Centered CHARCOT-MARIE-TOOTH SUMMIT 1 Welcome Letter 2 Schedule 4 Event Speakers and Panelists 32 Abstracts/Research Studies Thank you to PCORI The Hereditary Neuropathy Foundation (HNF) would like to thank the Patient-Centered Outcomes Research Institute (PCORI) for nominating HNF for the PCORI’s Eugene Washington PCORI Engagement Award. HNF is grateful for the support of PCORI for this ground-breaking Summit which include patients with all forms of Inherited Peripheral Neuropathies (INP's), caregivers, clinicians, researchers, funding agencies, and industry to discuss the barriers and opportunities impacting the translation of patient-reported outcomes into objective measures. The Summit you are attending today was partially funded by this award and was instrumental in the success of the Summit. HNF-CURE.ORG 1 WELCOME TO THE 1ST HNF Patient-Centered Charcot-Marie-Tooth Summit! We are thrilled to have you join this event, one that HNF is hoping to make an annual event. What makes this Summit so special is that the innovative content was developed in collaboration with numerous patient advocates, caregivers, clinicians, researchers, funding agencies and industry with one unified goal in mind...giving the patient a voice in discussing barriers and opportunities impacting their treatment. You will have the chance to hear the latest in research developments, participate in panel discussions with clinicians, and voice your needs and priorities in regards to CMT research and treatments. HNF believes that bringing all groups TOGETHER can influence research to be more patient-centered, useful, trustworthy, and ultimately lead to lifestyle guidelines and treatments for CMT/IN, making a difference in your life TODAY. This Summit is BY patients and FOR patients. We NEED patients to participate and make this Summit a S-U-C-C-E-S-S! A special thanks to this year’s Sponsors, Partners and Collaborators who allowed us the opportunity to provide scholarships, welcome bags, host meals and snack breaks, and share the outcomes from the Summit online: Acceleron Fearless Caregiver PenAgain Alter-G Inspire Pharnext Bombas Socks Invitae Pria Gonzales/Walmart CapTel MNG Labs Rare Disease Report CoolMess Neurology Reviews VirtuSense Technologies Dorothy J. Fairman Travel Scholarship Ortho Rehab Designs whatshouldwedo.com Thank you to the Technical Planning Committee that helped shape the content, identify speakers and panelists, and develop a comprehensive program to share with you: Joy Aldrich Courtney Hollett Dr. Lucia Notterpek Matt Downing Debi Houliaris Dr. James Nussbaum Dr. Sean Ekins Elizabeth Katz Jessica Roberts Kristin Gelzinis Joy Kaye Tina Tockarshewsky Dr. Mark Gudesblatt Estela Lugo So please join in, make new friends, create new collaborations, build new partnerships, but most importantly, Be Inspired! On behalf of the entire Hereditary Neuropathy Foundation and Technical Planning Committee, we welcome you to the iconic New York City! We are glad you are able to attend. Warm regards, Allison Moore Founder and CEO Hereditary Neuropathy Foundation 2 PATIENT-CENTERED CHARCOT-MARIE-TOOTH SUMMIT Thursday, October 6, 2016 7:30am – 8:15am Continental Breakfast 8:15am – 8:30am Opening Remarks 8:30am – 9:00am Keynote Speaker: Culinary Nutritionist, Stefanie Sacks, M.S., C.N.S., C.D.N. and Author of What the Fork Are You Eating? “An Action Plan for Your Pantry and Plate” Navigating nourishment and learning how to cook CAN make a difference in how you feel—small changes in food choice can be part of YOUR prescription for healing. 9:00am – 9:20am Speaker: Kim Goodsell, CMT Patient, “The Patient of the Future: Patient as Expert, Health Maker, and Collaborator” How an extreme athlete uncovered her own genetic flaw. When Kim Goodsell discovered that she had two extremely rare genetic diseases, she taught herself genetics to help find out why. 9:25am – 10:00am Panel Discussion, Moderator, Lori Sames, Founder of Hannah’s Hope Fund, “Genotype and Phenotype: Managing Symptoms, The Role of Researchers/Clinicians” CMT has many different forms – each with different causes and symptoms. Lori Sames, “Fighter Mom” of a child with a form of IPN, champions gene therapy and shares how researchers and clinicians can help. Panelists: Joy Aldrich, David Walk, M.D., Chris Tan, M.S., L.C.G.C. 10:00am – 10:20am Break 10:20am – 11:00am Panel Discussion, Moderator, Tim Boyd, NORD’s Associate Director of State Policy and Advocacy “Public Policy” Better AFO (leg-bracing) options, fast-tracking drug discoveries and clinical trials, applying for disability benefits, Medicare/Medicaid and services you may be eligible for. These pose a real challenge to CMT/IPN patients. How can we empower one voice for change in the system? Panelists: Albert Xinliang Liu, Ph.D., John Maddox, Bernadette Scarduzio, and Mitchell Warner, C.P.O., Xinliang “Albert“ Liu, Ph.D., 11:05am – 11:55am Speakers: Robert Burgess, Ph.D., Sean Ekins, M.Sc., Ph.D., DSc., Steven Gray, Ph.D., and Lucia Notterpek, Ph.D. “Research Presentations” Hear the latest from researchers on translational drug discovery, clinical trials and more! 12:00pm – 1:00pm Working Lunch, Moderator, Gary Barg, CMT patient and advocate, “The Fearless Caregiver: The Caregiver’s Voice Matters and the Role of the Caregiver in Patient-Driven Research” Survey results show that 39% of adults, that’s 90 million Americans, are caregivers. Let’s discuss reducing the caregiver’s stress, learning ways to communicate effectively with healthcare providers, and the caregiver’s role in clinical trials, and more. Panelists: Kerin Reilly, Marguerite Loucas, Erin Howard HNF-CURE.ORG 3 1:15pm – 2:00pm Panel Discussion, Moderator, Stefanie Sacks “Personalized Nutritional and Exercise Prescription for the CMT/IPN Patient” How many times have we heard, “Exercise, but don’t overdo it”? “Eat more protein and less veggies and fruits”? We’ll discuss what works best from actual CMT patients, and nutritional and exercise experts. Panelists: Brent Baker, Ph.D., A.T.C.; Jennifer Decker, Kristin Gelzinis, Estela Lugo, Chris Wodke 2:05pm – 2:40pm Panel Discussion, Moderator, James Nussbaum, P.T., Ph.D., S.C.S., E.M.T. “Gaps in Available Patient-Reported and Clinical Outcome Measures and Barriers to Therapy Development” Discussion about the importance of the accurate assessment of how a patient improves from a baseline measurement and new technology tools to be used by clinicians to quantify change. Panelists: Mark Gudesblatt, M.D., Kenneth Attie, M.D., David Scher, M.D., Glenn Pfeffer, M.D. 2:40pm – 3:00pm Break 3:00pm – 3:40pm Panel Discussion, Moderator, Florian P. Thomas, M.D., M.A., Ph.D., M.S.; Chairman, Neuroscience Institute, and Director, Hereditary Neuropathy Center, Hackensack University Medical Center, “The Squeaky Wheel Gets the Grease: The Art of Being a Successful Patient is to Know How to Get on Your Doctor’s Nerves and Feel Good About It”. The Chair of HNF Centers of Excellence speaks out on knowledge gaps among health care professionals, how to identify providers that are well versed in CMT, what patients should expect from their providers, and how they can advocate for themselves or loved ones. Panelists: Allison Moore, Debi Houliares, Brian Loew 3:45pm – 4:25pm Panel Discussion, Moderator, Tim Coté, M.D., M.P.H., C.E.O. Coté Orphan “Participating in a Clinical Trial: The Good, the Bad and the Benefits” Now is an exciting time! Finally there are clinical trials for CMT, but what does that mean for you? You need to know the facts. Dr. Tim Coté explains why orphan drugs are special and how being a rare disease impacts your clinical trial. Panelists: Mario Saporta, M.D., Ph.D., M.B.A., Matthew Downing, René Goedkoop, M.D. 4:30pm – 5:00pm Speaker: Michael Sereda, M.D., Professor of Neurology and Group leader in the Department of Neurogenetics, Max Planck Institute (MPI) of Experimental Medicine, Göttingen, Germany “Translational Medicine in CMT: Update on Preclinical and Clinical Trials” Hear the latest on these exciting new potential treatments for CMT. 5:05pm – 5:25pm Speaker: Robert Moore, husband to Founder/CEO of HNF “The High-Arched Foot: This is the Beginning? The Disease Awareness Challenge” Robert knows all too well the ins and outs of CMT/IPN’s. Over 90% of patients with CMT have a high-arched foot. Can this be the solution to the awareness problem? 5:25pm – 5:30pm Closing Remarks 5:30pm – 7:30pm Poster Session & Evening Reception 4 PATIENT-CENTERED CHARCOT-MARIE-TOOTH SUMMIT PANELIST KEYNOTE SPEAKER Allison Moore, Founder Stefanie Sacks, M.S., and C.E.O. C.N.S., C.D.N. Allison Moore founded Hereditary Neuropathy Foundation An Action Plan for Your Pantry and Plate in 2001 in an effort to improve the quality of life for people with Charcot-Marie-Tooth. She spearheaded the foundation 8:30am – 9:00am after a hospital mishap where she was treated with The Hereditary Neuropathy Foundation is proud and medications that exacerbated her CMT symptoms. Today privileged to introduce Stefanie Sacks, our keynote speaker she can not walk without AFOs and has severe muscle at the first Patient-Centered Charcot-Marie-Tooth Summit atrophy, bi-lateral foot drop and hand weakness and on October 6, 2016 in New York City. deformity. If only her doctors knew that certain drugs were contraindicated and can bring out symptoms in patients Stefanie Sacks, M.S., C.N.S., C.D.N. is a Culinary Nutritionist, with a family history of CMT. Her goal was to create a author, consultant, speaker and food firebrand! foundation that would lead to the development of treatments and a cure for CMT, and increase awareness so She has been studying food and healing for 30 years, has the world would recognize CMT as a household name.
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