Today's post from neuropathy.org (see link below) marks the end of an era in that it announces the end of neuropathy.org which is the site of the American Neuropathy Association. The Neuropathy Association has long been a bulwark of information for neuropathy patients throughout North America and the world and it's somewhat surprising that they are ending their operations. In fact, they are passing the torch on to the Foundation for Peripheral Neuropathy, who will continue their work; so there will continue to be a US organisation representing neuropathy patients.
Tina M. Tockarshewsky President and CEO December 2014 – Final Edition
Dear reader,
When The Neuropathy Association started 20 years ago, our main purpose was to bring awareness and legitimacy to peripheral neuropathy, as well as to offer support and outreach to millions suffering alone in the darkness of their unrecognized disease.
Over the years, the community’s needs grew exponentially alongside our growing understanding of the complexities...and pervasiveness...of the global neuropathy epidemic. We expanded beyond the patients who founded the organization during their IVIG infusion time to include patients with all types of neuropathy, as well as the family members, caregivers, healthcare professionals and researchers dedicated to helping them. We reached out to media and policy makers nationally and locally to make sure they understood the extreme challenges our community faced due to lack of proper care, therapies, and cures. From the halls of Congress to Today show viewers’ TV screens and up into the night skies over famous landmarks, we gave neuropathy the exposure it had never had before. The ultimate goal has been and continues to be that, through research, education, and greater awareness, we would learn the causes and how to treat, prevent and/or cure the over 100 different types of neuropathy.
The Neuropathy Association and its supporters and volunteers over the years can take great pride in what we have accomplished together in two decades. And despite the fact that the search for cures continues, the milestones reached to date have been significant. Our innovative educational and social media programs have received high praise and inspired others to follow our lead. Our advocacy work resulted in appointments on high-level and influential federal government advisory councils. Our research grants program yielded significant findings, including discovering key genes for hereditary neuropathies. Our support groups comforted and counseled thousands every year. Thanks to partnerships with our community and our corporate partners, there is an ever-increasing rate of clinical trials in development...and keep in mind that ALL of the FDA-indicated therapies available today only came to market within the past 10 years!
At the end of 2007, no one anticipated the national economic downturn. At the time, the Association had just completed a major re-organization and new strategic directions, but like all other nonprofit and for profit organizations we, too, were not prepared for the national financial crisis, reduced foundation funding, or the impact of new restrictions and tighter regulations put on companies that had helped to financially support us in the past. Then followed the drastic Medicare cuts suffered by healthcare professionals specializing in neuropathies that have severely compromised their business and forced many professionals out of business...that, in turn, has hurt you as well as us.
With so many in the neuropathy community struggling...and with new times needing new approaches to getting the job done, it became mission critical for the Association to find a new way to do business...and find a new battleplan to bring our community the cures and treatments we so desperately need...
When 2015 starts this week, the new year will begin a new chapter for our neuropathy community. Recently, you received communication from us by email and mail sharing that The Neuropathy Association has decided to dissolve and close its doors, passing the torch of our mission to the Foundation for Peripheral Neuropathy. It is a bittersweet and difficult decision for us but a necessary one to move our mission forward in the new way that is necessary. Please know that our decision was a thoughtful one that was based on our commitment to high-level service for you and took into account our options according to New York law. In doing so, we have chosen a strategic partner that we fully support and trust will achieve our mutual goals in the future. The decision to close our doors is difficult, but the decision to select the Foundation for Peripheral Neuropathy to continue to work on behalf of The Neuropathy Association’s donors is the right choice. We believe the result will be a single and powerful charitable 501(c)(3) organization that will capitalize on the strengths of both organizations to better serve the neuropathy community. (See lead article below)
We encourage you to join us in supporting the Foundation for Peripheral Neuropathy as they move forward with our collective mission and continue to cultivate and grow the programs we started for you. The future is exciting and the possibilities are within our grasp...let’s seize the day and make it happen!
On behalf of the Association, I want to thank everyone who has worked with us over the years as community volunteers, support group leaders, national and chapter board members, and advisory council members...your leadership kept our mission strong for two decades. I also thank everyone who generously donated monies, time, and talents to support our programs...you helped to make us the trusted community resource millions could turn to for help. And, finally, I want to express my great thanks and deep appreciation to the staff team working tirelessly with me for so many years: Natacha Pires, director of medical and public affairs, and Paul Guidos, director of operations. 24/7/365 the staff team committed themselves to the mission of this organization and to helping as many of the 20 million Americans as they could…their work and their legacy lives on in the improvements in neuropathy patient education, the greater national awareness, and significant care improvements big and small that many of us today benefit from that were not available just a few short years ago.
In saying goodbye and closing our doors, we should all know that great work has been accomplished to move the mission forward...and we should all feel hopeful about the opportunities ahead of us. May our greatest hope for cures be realized soon, and may you continue to fight for the care and quality of life improvements you deserve. It has been my honor to fight for you over past 10 years, and thank you for the privilege of working on your behalf as your national advocate. The experiences have enriched my life, and I am grateful for every wonderful person I have met over the years, every candid conversation, and every wisdom you have taught me.
I wish each and every one of you good health and every happiness in the New Year.
Sincerely,
Tina M. Tockarshewsky
President and CEO
http://www.neuropathy.org/site/MessageViewer?em_id=15881.0
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