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Living with Charcot-Marie-Tooth: Leg Braces & Air Travel

Living with Charcot-Marie-Tooth: Leg Braces & Air Travel

Living with Charcot-Marie-Tooth during the holidays can be challenging when it comes to air travel. CMT patients who wear leg braces may encounter longer security checkpoint times and difficulty navigating stairs and sloped walkways. Planning and preparation are key to making your holiday travels safe and comfortable. CMTers who use leg braces share their tips and best advice for air travel in our CMT Inspire Community. Join HNF’s online support group today, share your stories, and have conversations with other CMT’ers in a place created just for...

We’re Here To Help: The Hereditary Neuropathy Foundation’s Healthcare Provider Directory

The Hereditary Neuropathy Foundation is thrilled to announce the launch of the first online health care provider directory that has ever been offered to this community to include comprehensive testing to certify health care professionals (HCPs). HNF’s Health Care Provider Directory enables patients to research and find the HCPs who address the unique needs and considerations of those living with Charcot-MarieTooth (CMT) and other inherited neuropathies (INs). Participating HCPs can utilize the directory to find the information and resources to better serve the CMT and IN community. Why did we decide to launch this directory now? We are at a critical point in our understanding of these rare diseases. While the collaboration among academia, government, and industry has made great strides in developing advanced diagnostics and treatments for CMT and INs, there are still no cures. Without a cure, patients of inherited neuropathies require a multidisciplinary approach for managing symptoms and maintaining quality of life. A CMT patient’s functionality, quality of life, and disease management depend on working with a team of HCPs, such as neurologists, physical therapists, pain specialists, orthotists, and other specialists. Finding those HCPs has been especially challenging for the inherited neuropathy community. There hasn’t been a reliable resource available to find local HCPs who are familiar with the complexities of treating the whole person with CMT or INs. Until...
Ride For Charcot-Marie-Tooth Awareness & Research: 2016 TD Bank Five Boro Bike Tour

Ride For Charcot-Marie-Tooth Awareness & Research: 2016 TD Bank Five Boro Bike Tour

The Hereditary Neuropathy Foundation (HNF) is thrilled to participate as a Charity Partner for the 2016 TD Bank Five Boro Bike Tour for the fifth year in a row. This is an extraordinary event where participants bike through all five New York boroughs to help increase awareness and raise dollars to fund Charcot-Marie-Tooth (CMT) research.

HNF Partner Spotlight: The National Organization For Rare Disorders (NORD) & Neurology Reviews

HNF Partner Spotlight: The National Organization For Rare Disorders (NORD) & Neurology Reviews

The National Organization For Rare Disorders (NORD) has served as a resource for the rare disease community for more than 30 years. NORD provides the education, advocacy, and patient care programs for those living with rare diseases. While great progress has been made, NORD President & CEO Peter L. Saltonstall cautions that people with rare diseases often wait too long for an accurate diagnosis and effective treatment. The average time to diagnose a rare disease is about 7 years. Over 7000 diseases are considered rare in the US. Many of them present as multisystemic disorders, making diagnosis for health care professionals (HCPs) a considerable challenge. NORD has partnered with Frontline Medical Communications, the parent company of Neurology Reviews, to address this challenge and help develop innovative educational programs for HCPs. This partnership is critical in bridging the gap between HCPs and the rare disease community. The Hereditary Neuropathy Foundation has joined NORD and Neurology Reviews in the joint mission to expedite diagnosis and treatment for those living with rare diseases, and provide HCPs with the skills and tools they need to serve the rare disease community. HNF has launched the first comprehensive, online health care provider directory for the hereditary neuropathy community. HNF’s Health Care Provider Directory enables patients to research and find the HCPs who address the unique needs and considerations of those living with Charcot-Marie-Tooth (CMT) and other inherited neuropathies (INs). Participating HCPs can utilize the directory to find the information and resources to better serve the CMT and IN community. HNF is excited to be a part of the ongoing effort to provide patients, families, and...
Does your Charcot-Marie-Tooth symptoms make dog ownership difficult?

Does your Charcot-Marie-Tooth symptoms make dog ownership difficult?

Does your Charcot-Marie-Tooth symptoms make dog ownership difficult?  Do you wear braces that make it challenging to bend down and clean up after your dog? Do you use a cane for balance and worry about you  and your pet’s safety while walking? The responsibilities of pet ownership can pose additional challenges for those living with CMT, and may discourage bringing a dog into their family home.  If you are a CMTer who owns a dog, please help others by sharing your helpful dog ownership tips on our CMT Inspire online community.   Not a member yet? You can Join the Inspire Community today.  The Hereditary Neuropathy Foundation created this online community for conversations just like this!  Share your stories and have conversations with other CMT’ers in a place created just for you.  Click here to...
Champions For Charity: Helping Those Living With Charcot-Marie-Tooth

Champions For Charity: Helping Those Living With Charcot-Marie-Tooth

What if every purchase you make this holiday season could earn dollars for Charcot‐Marie‐Tooth research? This holiday season, The Hereditary Neuropathy Foundation is participating in the Americana Manhasset Champions for Charity®. Come shop at the famous “Miracle Mile” that Billy Joel sings in his song! From Thursday, December 3, through Sunday, December 6, over 70 participating Americana Manhasset and Wheatley Plaza stores will donate 25% of designated full‐price, pre‐tax purchases to the participating organization(s) of the customer’s choice. Purchases are not automatically eligible; you must register for a complimentary CHAMPION CARD, designate the Hereditary Neuropathy Foundation as your charity of choice, and present your CHAMPION CARD when making purchases during the event. To register for your card, visit championsforcharity.org or call 800.818.6767. **Not nearby? You can still participate by shopping via telephone and have your gifts...
Leg Braces, AFOs & CMT: Finding the Right Fit

Leg Braces, AFOs & CMT: Finding the Right Fit

Has the time come for leg braces? If so, there are a lot of options to find the right brace for you. If you have braces, share your story about getting fitted and finding the right braces with our community to help others with their search. What type of professional fitted you and are you happy with the result? Let us know! Your good and bad stories help others with CMT in their journey. Be sure to include the state or country where you were fitted to help your neighbors. We created an online community for conversations just like this. Are you a member? Join the Inspire community today to share your stories  and have conversations with other CMT’ers in a place created just for you. Click...
Team CMT: Join The Movement & Make A Difference!

Team CMT: Join The Movement & Make A Difference!

The holiday season is a great opportunity to make a difference for those living with Charcot-Marie-Tooth by joining the Hereditary Neuropathy Foundation Team CMT. Team CMT is a grassroots community fundraising program with 160 members in 32 states and 6 countries. We even have a special team just for kids. Team CMT Kids is focused on supporting children with CMT in our schools. The members of Team CMT are at the front line raising CMT awareness in local communities around the world. No action or amount is too small. Every effort you make becomes an integral part of helping those living with CMT. What do Team CMT members do? Members can share their story by creating a personal fundraising page account on our Team CMT donor page. They can also host and represent Team CMT at various events such as walks, bike races, and marathons. Just check out Team CMT’s founder Chris Wodke and her amazing contribution to CMT awareness. Or Ed Moore, who is putting it all out there with his creative and bold fundraising strategy. Michael Watkins who is bravely tackling some of the toughest mountain bike races in the country. And Timmy Dixon, a CMT amputee who represented Team HNF in the 2015 TD Five Boro Bike Tour. It is an exciting time for the CMT community with increased global awareness and the recent developments in CMT research. Current studies are bringing us closer to understanding and creating the technology needed for accurate disease prognosis, effective genetic counseling, and developing targeted therapies. So come join us this holiday season and help HNF and Team CMT continue...
#MyGivingStory

#MyGivingStory

This November, the #GivingTuesday movement is running #MyGivingStory, a new storytelling contest that will highlight acts of generosity that may take place out of the public spotlight. They are asking individuals across the country to share their personal reasons for giving, and then share those stories with their communities. As a supporter of the Hereditary Neuropathy Foundation, we’d be honored if you would take this opportunity to reflect upon your commitment to our work. Winners will receive Global Giving gift cards ranging from $100-500. The nonprofit they write about in their essay will receive $1,000-5,000 grants. Upworthy will also develop and share articles featuring the two first-place winning stories. How to Enter #MyGivingStory Go to the contest entry form (http://woobox.com/kxdcce) or visit the #MyGivingStory tab on #GivingTuesday’s Facebook page. Post a short essay (200-words or more) responding to the question, “What inspires you to give?” In it, tell the story of a specific instance in which you supported a nonprofit organization in a way that was meaningful to you. *Kindly include www.hnf-cure.org web address in your essay* Submit your essay by November 24, 2015. Share and promote your submission on social media with #MyGivingStory and #GivingTuesday. Contact [email protected] with any questions! Thank you for your support of the Hereditary Neuropathy Foundation. We are excited about #MyGivingStory and #GivingTuesday, and hope you will participate in all our year-end...
Thursday, December 3 – Sunday, December 6: Champions for Charity Americana Manhasset, New York

Thursday, December 3 – Sunday, December 6: Champions for Charity Americana Manhasset, New York

Holiday Shopping Benefit – Shop Till You Drop Hereditary Neuropathy Foundation is participating  in the Americana Manhasset’s Champions for Charity®. From Thursday, December 3 through Sunday, December 6, over 70 participating Americana Manhasset and Wheatley Plaza stores will donate 25% of designated full-price, pre-tax purchases to the participating organization(s) of the customer’s choice. Purchases are not automatically eligible; you must register for a complimentary CHAMPION CARD, designate the Hereditary Neuropathy Foundation as your charity of choice, and present your CHAMPION CARD when making purchases during the event. Registration for your Champion Card begins October 10th! Questions email [email protected] For more information and to register for your card  visit championsforcharity.org or call...
Save the Date: Friday  January 29, 2016 Boca Raton, Florida to Benefit CMT Type 2

Save the Date: Friday January 29, 2016 Boca Raton, Florida to Benefit CMT Type 2

  Charity Card Party Brunch and Boutique Please join us January 29, 2016 at 10:30 at Broken Sound Country Club, Boca Raton Florida. Join Board Members Iris and Nat Adler for an exquisite brunch and card party to benefit the H.E.L.P fund/HNF at Broken Sound Country Club in Boca Raton, FL. All proceeds will be donated to the Hereditary Neuropathy Foundation to support people living with Charcot-Marie-Tooth and to fund research into CMT type 2, which affects the Adler’s grandson Elliot. Register today! Questions? Please email...