Site to raise awareness for Charcot Marie Tooth. Discuss my quest to run the Boston Marathon while having CMT. Talk about training and doing marathons, half marathons, triathalons and duathalons. Discuss being an athlete with a disability.
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Tuesday, July 12, 2016
HNF Hosts Patient Conference
The HNF will be hosting a patient conference this October. Here is the agenda for the day. Hope to meet many of you there. I will be part of the panel discussion on nutrition and exercise. Go to the HNF site to register.
Join us for the first Patient-Centered Charcot-Marie-Tooth Summit
7:30am – 8:15am: Continental Breakfast
8:15am – 8:30am: Opening remarks
8:30am – 9:00am: Keynote Speaker: Culinary Nutritionist, Stefanie Sacks, MS, CNS, CDN 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”
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: 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.
10:00am – 10:30am Break
10:30am – 11:10am“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?
11:15am – 12:00pm: Speakers: Dr. Michael Sereda, Dr. Lucia Notterpek and Dr. Andy Grierson“Research Presentations”
Hear the latest from researchers on translational drug discovery, clinical trials and more!
12:00pm – 12:45pm: Working Lunch: 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.
1:00pm – 1:40pm: Panel Discussion: Stefanie Sacks, Moderator“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.
1:45pm – 2:25pm: Panel Discussion: James Nussbaum, PhD, PT“Gaps in Available Patient Reported Outcomes 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.
2:30pm – 3:00pm: Break
3:00pm – 3:40pm: Panel Discussion: Florian P Thomas, MD, MA, PhD, MS; 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.
3:45pm – 4:25pm: Panel Discussion:“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.
4:30pm – 4:45pm: Speaker: Pharnext SAS“Pharnext Update on Phase 3 Clinical Trial of PXT-3003″
Hear the latest on this exciting new potential treatment for CMT1A.
4:50pm – 5:20pm: 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?