Bärbel
Moderator
Dearest Friends and Families,
I must let you know that after much thought and consideration, I have officially resigned from the IRSF, effective March 20. Please know that between now and then and afterwards, I will continue to be there for those who need me. Rett syndrome has been my life’s work for the last two and a half decades and this will not change. With the knowledge I have gained over the last 33 years, coupled with a close liaison with an extensive network of caring professionals in the Rett syndrome field, I will continue to bring you help and hope.
I am building a website, www.RettHelp.info, where I will provide resources, give answers, be your advocate and share some creative writing. Please be reassured that I do not intend to compete with IRSF; the objective of this new initiative is to allow me to use my time and talents to serve you in a more thorough and meaningful way.
I believe there is an essential need for this endeavor, and I welcome your support, suggestions and general input. Please let me know if you want to help. Hopefully, the website will be operational by the end of March.
In the meantime, I always love to hear from you! You can reach me at
Kathy Hunter, 8511 Rose Marie Drive, Fort Washington, MD 20744, 301-248-1396 or 301-751-6368 and my new email is kathy_hunter@verizon.net.
I would like to share the following reflection on where I have been….
I am so happy that I could brighten one little corner of the world. To be honest, I would much rather have lived a boring life of anonymity, free of the pain and challenge of Rett syndrome that fell upon my only beloved daughter. But that was something I could not change, so, I chose to change what I could.
When my daughter was the first child diagnosed with Rett syndrome in the USA, I knew there must be many others who shared our journey. I set out to find them, and in the process the International Rett Syndrome Association was born on the kitchen table of my small brick rambler. The organization remained in my home for ten years, and when we ran out of room, IRSA moved to the community.
IRSA celebrated 23 years of success…23 annual conferences in 23 years, $70 million lobbied for in NIH funds, $3.5 million raised privately for research, a national Advocacy Award of Merit, five award-winning media productions, coverage in more than five hundred media outlets, a nationally televised documentary, funding of the discovery of the gene which causes Rett syndrome, and the identification of thousands of girls and women who have finally been properly diagnosed and treated. Not bad for a little known disorder that wasn’t recognized in the American medical community until late 1983.
Over the years, I have spoken with more than a thousand parents of children with RS, and have felt honored to meet even more of their children. I have worked with scores of doctors, dozens of researchers, met more than my share of celebrities, appeared on television talk shows, been interviewed for newspapers, magazines and the news. I have met with leaders in Congress and poor families in dusty little towns in South America who rode a bus for 24 hours to get there. I have written poetry to fill my soul and letters to the Editor of major newspapers. I have written four books on Rett syndrome and have had articles published in prestigious neurology journals. I even wrote a children’s coloring book about Rett syndrome. A lot of people call me Mama Rett.
For the last twenty-three years, I held IRSA in my hands. I gave her birth, watched over her infancy, agonized over her adolescence, admired her young adulthood and saw her grow to a full-fledged grown up organization, able to compete with the best of them. I am so very proud, and I am so very grateful for so many kind, caring and dedicated people who gave selflessly and helped along the way to make IRSA the great success that it was.
I wasn't trained for the job. I started out as an anguished mom looking for answers. I immersed myself in neurology textbooks until I learned the difficult jargon and could relate to researchers. Then I learned how to partner with them. I found out how much money was needed for research and sought ways to raise it. I spent many long nights talking to new families over the kitchen stove or by my child’s bedside at the hospital because the need was so great.
Over time, necessity taught me how to learn computer technology I never even knew how to spell, much less operate. I learned how to talk in front of an audience who was moved by the message in my voice, only slightly louder than my shaking knees. I put my passion on paper and wrote from my heart, what I thought would be helpful to families. I learned to organize and recruit others to the cause. I took my sweet daughter to Congress for the first time in 1986, and brought along others for another twenty years, leading to an accumulation of millions in research funds.
Along with others, I spent long days and sleepless nights in worry, wondering what new direction IRSA should take, an IRSA that had become the safety net and soft place to land for families who were devastated by what Rett syndrome did to their lives.
Over the years, it has taken much of my energy and a lot of heart to stay at the forefront when my family’s needs were so great. I have worked more weekends than not, lost sleep I can’t recover and missed times with my family that won’t ever come again. My family has made many sacrifices along the way. I have kept at it because as soon as I felt ready to quit, a new parent called in crisis, renewing my passion to find them help and give them hope – and I know what it is like to have neither.
Over the years, I have received a few honors, but none compares to the remarkable rewards I have received from being a touchstone for families, a source of information for an uninformed public, and a catalyst for progress in research that has made a meaningful difference in so many lives.
I have received much more than I have given – the satisfaction of knowing that I have been helpful, the pride of knowing that I have furthered research, the knowledge that I have brightened a dreary path – and more than anything, I wonderful friendships with people who have infused my life with their strength, courage and resilience. I am so grateful for the mentors who have contributed their wisdom, knowledge and expertise, but also those who have contributed their own life story to the Big Book of Rett. My real heroes are the girls with Rett syndrome who, throughout it all, try to communicate when we don’t understand, withstand the hurts we don’t always recognize, and quietly face their overwhelming challenges -- still smiling at us with their whole being.
Rett syndrome is so deep in my heart I can’t see to the bottom. I feel that I still have so very much to contribute. I want to continue to give comforting words at the time of diagnosis, consoling words at the time of death; I want to have time to listen quietly and time to talk softly; I want to have energy to lobby Congress, energy to urge researchers on; I want to give advice for families who face a future in which their baby will never be normal, advice for families whose daughters are aging beyond their ability to care for them; I want to use pen and ink to spread the word with enthusiasm, and to heal hearts with the salve of understanding that can only come from someone who has been there.
The phrases I coined, “No Longer Alone” and “Care Today…Cure Tomorrow,” are etched indelibly on my heart. I have much more to give, and I look forward to doing just that. See you at www.RettHelp.info.
Kathy Hunter
Parent, IRSA Founder and IRSF Ambassador
Author, The Rett Syndrome Handbook I and II
www.rettsyndrome.org
1-800-818-7388
I must let you know that after much thought and consideration, I have officially resigned from the IRSF, effective March 20. Please know that between now and then and afterwards, I will continue to be there for those who need me. Rett syndrome has been my life’s work for the last two and a half decades and this will not change. With the knowledge I have gained over the last 33 years, coupled with a close liaison with an extensive network of caring professionals in the Rett syndrome field, I will continue to bring you help and hope.
I am building a website, www.RettHelp.info, where I will provide resources, give answers, be your advocate and share some creative writing. Please be reassured that I do not intend to compete with IRSF; the objective of this new initiative is to allow me to use my time and talents to serve you in a more thorough and meaningful way.
I believe there is an essential need for this endeavor, and I welcome your support, suggestions and general input. Please let me know if you want to help. Hopefully, the website will be operational by the end of March.
In the meantime, I always love to hear from you! You can reach me at
Kathy Hunter, 8511 Rose Marie Drive, Fort Washington, MD 20744, 301-248-1396 or 301-751-6368 and my new email is kathy_hunter@verizon.net.
I would like to share the following reflection on where I have been….
I am so happy that I could brighten one little corner of the world. To be honest, I would much rather have lived a boring life of anonymity, free of the pain and challenge of Rett syndrome that fell upon my only beloved daughter. But that was something I could not change, so, I chose to change what I could.
When my daughter was the first child diagnosed with Rett syndrome in the USA, I knew there must be many others who shared our journey. I set out to find them, and in the process the International Rett Syndrome Association was born on the kitchen table of my small brick rambler. The organization remained in my home for ten years, and when we ran out of room, IRSA moved to the community.
IRSA celebrated 23 years of success…23 annual conferences in 23 years, $70 million lobbied for in NIH funds, $3.5 million raised privately for research, a national Advocacy Award of Merit, five award-winning media productions, coverage in more than five hundred media outlets, a nationally televised documentary, funding of the discovery of the gene which causes Rett syndrome, and the identification of thousands of girls and women who have finally been properly diagnosed and treated. Not bad for a little known disorder that wasn’t recognized in the American medical community until late 1983.
Over the years, I have spoken with more than a thousand parents of children with RS, and have felt honored to meet even more of their children. I have worked with scores of doctors, dozens of researchers, met more than my share of celebrities, appeared on television talk shows, been interviewed for newspapers, magazines and the news. I have met with leaders in Congress and poor families in dusty little towns in South America who rode a bus for 24 hours to get there. I have written poetry to fill my soul and letters to the Editor of major newspapers. I have written four books on Rett syndrome and have had articles published in prestigious neurology journals. I even wrote a children’s coloring book about Rett syndrome. A lot of people call me Mama Rett.
For the last twenty-three years, I held IRSA in my hands. I gave her birth, watched over her infancy, agonized over her adolescence, admired her young adulthood and saw her grow to a full-fledged grown up organization, able to compete with the best of them. I am so very proud, and I am so very grateful for so many kind, caring and dedicated people who gave selflessly and helped along the way to make IRSA the great success that it was.
I wasn't trained for the job. I started out as an anguished mom looking for answers. I immersed myself in neurology textbooks until I learned the difficult jargon and could relate to researchers. Then I learned how to partner with them. I found out how much money was needed for research and sought ways to raise it. I spent many long nights talking to new families over the kitchen stove or by my child’s bedside at the hospital because the need was so great.
Over time, necessity taught me how to learn computer technology I never even knew how to spell, much less operate. I learned how to talk in front of an audience who was moved by the message in my voice, only slightly louder than my shaking knees. I put my passion on paper and wrote from my heart, what I thought would be helpful to families. I learned to organize and recruit others to the cause. I took my sweet daughter to Congress for the first time in 1986, and brought along others for another twenty years, leading to an accumulation of millions in research funds.
Along with others, I spent long days and sleepless nights in worry, wondering what new direction IRSA should take, an IRSA that had become the safety net and soft place to land for families who were devastated by what Rett syndrome did to their lives.
Over the years, it has taken much of my energy and a lot of heart to stay at the forefront when my family’s needs were so great. I have worked more weekends than not, lost sleep I can’t recover and missed times with my family that won’t ever come again. My family has made many sacrifices along the way. I have kept at it because as soon as I felt ready to quit, a new parent called in crisis, renewing my passion to find them help and give them hope – and I know what it is like to have neither.
Over the years, I have received a few honors, but none compares to the remarkable rewards I have received from being a touchstone for families, a source of information for an uninformed public, and a catalyst for progress in research that has made a meaningful difference in so many lives.
I have received much more than I have given – the satisfaction of knowing that I have been helpful, the pride of knowing that I have furthered research, the knowledge that I have brightened a dreary path – and more than anything, I wonderful friendships with people who have infused my life with their strength, courage and resilience. I am so grateful for the mentors who have contributed their wisdom, knowledge and expertise, but also those who have contributed their own life story to the Big Book of Rett. My real heroes are the girls with Rett syndrome who, throughout it all, try to communicate when we don’t understand, withstand the hurts we don’t always recognize, and quietly face their overwhelming challenges -- still smiling at us with their whole being.
Rett syndrome is so deep in my heart I can’t see to the bottom. I feel that I still have so very much to contribute. I want to continue to give comforting words at the time of diagnosis, consoling words at the time of death; I want to have time to listen quietly and time to talk softly; I want to have energy to lobby Congress, energy to urge researchers on; I want to give advice for families who face a future in which their baby will never be normal, advice for families whose daughters are aging beyond their ability to care for them; I want to use pen and ink to spread the word with enthusiasm, and to heal hearts with the salve of understanding that can only come from someone who has been there.
The phrases I coined, “No Longer Alone” and “Care Today…Cure Tomorrow,” are etched indelibly on my heart. I have much more to give, and I look forward to doing just that. See you at www.RettHelp.info.
Kathy Hunter
Parent, IRSA Founder and IRSF Ambassador
Author, The Rett Syndrome Handbook I and II
www.rettsyndrome.org
1-800-818-7388