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CMTA Circle of Friends

Joann Haase
Joann Haase

The writer, her daughter, and grandson have been diagnosed with Charcot-Marie-Tooth (CMT) disorder, a type of inherited peripheral neuropathy that causes muscular atrophy and sensory loss in the limbs and chronic pain. They are raising money for the CMTA, a non-profit focused on finding a cure through research. The CMTA's new STAR initiative aims to develop therapies for the three most common types of CMT within five years and potentially reverse symptoms within ten years. The family is asking for donations through an enclosed envelope or their online fundraising page to support the CMTA's research goals and help find a cure that they believe is just around the corner.

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Dear Friends and Family, As you may know, I, my daughter Ashley, and my grandson Hunter, have been diagnosed with Charcot-Marie-Tooth (CMT) disorder, a type of peripheral neuropathy that results in muscular atrophy and sensory loss in the arms and legs, and, as in my case, chronic pain. Many people have never heard of CMT, but it is actually the most common type of inherited peripheral neuropathy, affecting approximately 150,000 Americans and 2.6 million people worldwide. Our goal is to obtain the support of our circle of family and friends to help us raise money to support the work of the CMTA, the non-profit organization whose mission is To generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth. For 25 years, the vision of the CMTA has been a world without CMT. Now the vision has the potential to become a reality as the Strategy to Accelerate Research (STAR) moves research to a new level at an increased speed. The goals of the STAR initiative are ambitious: We expect to develop therapies for the three most prevalent types of CMT within the next five years and to be able to reverse symptoms within ten years. Attaining these goals will take an extraordinary commitment from the scientists and everyone who supports the work of the CMTA. This is why we need your help for us and other people affected by CMT. Many people with CMT have to deal with walking limitations, constant pain in their legs and feet, and the difficulties of holding a pen, opening a jar or buttoning buttons. In our family, Hunter, who is 3, needs physical therapy to gain strength and work on motor skills. Ashley underwent reconstructive hip surgery in 2009, and she will need further surgeries in the future. With damage in both my legs and hands, I became permanently disabled in 2003, and I currently wear braces on both legs in order to avoid problems with tightened muscles during the day. What keeps all of us going is the belief that a cure is just around the corner. When that time comes, we will look back and thank each of you who cared enough to support us in making our beliefs a reality, but now we need your help to fund research focused on understanding the genetics of CMT, finding ways to effectively manage current symptoms, and most importantly, carrying out clinical trials so that a cure may soon be available for ourselves and other people with CMT. To make a donation in support of Hunters Quest for the Cure, please use the enclosed envelope or visit our webpage at www.cmtausa.org/hunter. Thank you for caring and for helping us in our battle against CMT. Sincerely, JoAnn Haase (Vorass)

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CMTA Circle of Friends

  • 1. Dear Friends and Family, As you may know, I, my daughter Ashley, and my grandson Hunter, have been diagnosed with Charcot-Marie-Tooth (CMT) disorder, a type of peripheral neuropathy that results in muscular atrophy and sensory loss in the arms and legs, and, as in my case, chronic pain. Many people have never heard of CMT, but it is actually the most common type of inherited peripheral neuropathy, affecting approximately 150,000 Americans and 2.6 million people worldwide. Our goal is to obtain the support of our circle of family and friends to help us raise money to support the work of the CMTA, the non-profit organization whose mission is To generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth. For 25 years, the vision of the CMTA has been a world without CMT. Now the vision has the potential to become a reality as the Strategy to Accelerate Research (STAR) moves research to a new level at an increased speed. The goals of the STAR initiative are ambitious: We expect to develop therapies for the three most prevalent types of CMT within the next five years and to be able to reverse symptoms within ten years. Attaining these goals will take an extraordinary commitment from the scientists and everyone who supports the work of the CMTA. This is why we need your help for us and other people affected by CMT. Many people with CMT have to deal with walking limitations, constant pain in their legs and feet, and the difficulties of holding a pen, opening a jar or buttoning buttons. In our family, Hunter, who is 3, needs physical therapy to gain strength and work on motor skills. Ashley underwent reconstructive hip surgery in 2009, and she will need further surgeries in the future. With damage in both my legs and hands, I became permanently disabled in 2003, and I currently wear braces on both legs in order to avoid problems with tightened muscles during the day. What keeps all of us going is the belief that a cure is just around the corner. When that time comes, we will look back and thank each of you who cared enough to support us in making our beliefs a reality, but now we need your help to fund research focused on understanding the genetics of CMT, finding ways to effectively manage current symptoms, and most importantly, carrying out clinical trials so that a cure may soon be available for ourselves and other people with CMT. To make a donation in support of Hunters Quest for the Cure, please use the enclosed envelope or visit our webpage at www.cmtausa.org/hunter. Thank you for caring and for helping us in our battle against CMT. Sincerely, JoAnn Haase (Vorass)