Testimonials

I am so happy for you in this new venture. It will be so great for those who are just starting out to have such a knowledgeable advocate and friend at the other end of the phone or on the internet and to know where to go for advice and answers. You have the skills to make this new adventure spectacular and we wish you all the luck we can muster.

Catherine (Sarah, 32)

I would like to thank you for the inspiration you have given me dealing with Rett syndrome. You were the first parent I talked to after Wendi’s diagnosis and you were very comforting and helped me thru the hardest part of my life. You have accomplished so much since then and I’m so proud and grateful to have you as a friend, looking forward to being a part of RettHelp,

Stormi (Wendi, 21)

Sherri Brady (Lauren, 14)

I will never forget the time you took to listen to me cry and cry when I heard about Brittany and Brianna, and how I held on to every bit of wisdom you had to share. We need you., we care about you and couldn't walk this path without everyone of us out there....most of all you...

Dianne (Grandma to Brittany and Brianna, 13)

You may never know how much your words meant to me, not only about our angels and their "work" but also about telling me to look behind me at how far I've already come with Grace. You are such a fantastic and dynamic person.

Tara Reddington (Grace, 3)

You did such a wonderful job on the Rett Syndrome Handbook. It is such a comfort to access information from one trusted resource. You have made such a difference in our lives. You are just an angel.

Medeiros (Rachel, 2)

Twenty years ago our daughter Suzanne began losing skills. One of the doctors she saw mentioned Rett syndrome but refused to talk to us about it. Through a long round about way we were given Kathy Hunter's phone number. I made the call and Kathy spent nearly two hours on the phone with me. She shared many things with me that day. The two things that I remember most were: 1. "Never forget that whatever happens Suzanne is still your daughter". 2. "You have a choice to make, be bitter about what was happening to Suzanne or be better about it. Which did Suzanne deserve a bitter mom or a better mom." I have never forgotten that call. Thank you Kathy more than I can ever say.

Georgia Wright (Suzanne, 22)

You are an inspiration to us all. Thank you for being a voice for our special girls for so long. You will be a hero to us and many of our girls for the rest of our lives. We love you tons and will forever be indebted.

Tiffany Odell (Lena)

Thanks for being there. You have taken many of us by the hand and helped as we traveled this journey on a difficult road. Rett is a mountain on the road of life but you have taught us how to understand the mountain, ways to keep climbing -- even when we don't think we can do it another day. You have encouraged us.

Carol Cox (Jen, 34)

It has been almost a year since my granddaughter was diagnosed. I will always be grateful for the time you took talking to me on that awful day when our worst fears were confirmed. I am just one person. I wonder what the actual number is of the people you have helped directly or indirectly. Your choice to make yourself available to others who are confused, devastated, angry or alone has had a significant effect: you have changed lives; you have changed the world. I am not overstating this. Sometimes I think about people and how some will be remembered forever or changed lives forever and then most of the rest of us who are just bumbling through trying not to hurt or be hurt. I so admire what you have done. How you have channeled your grief.

Rose Vodrey (Rebecca, 2 )

You have been a giant in the Rett world and a great support to us, right from the beginning in 1985 when Elinor was first authoritatively diagnosed with Rett syndrome. You were the first and most inspiring contact we had with the Rett world.

Gene Valeriote (Elinor)

Our little Sophia just loved meeting you. She smiled and giggled almost the entire time you spoke to her... It must have been her special way to thank you for dedicating your life to our angels. Thank you Kathy, you inspire us each and every day to strive for the best for our little girl.

Michelle Mees (Sophia)

Yours is not an easy job, living with the impact of Rett syndrome in your family, as well as encouraging others who deal with Rett on a day-to-day basis. You demonstrate profound wisdom and empathy in addressing the needs and concerns of others who share the same struggles, and your words of encouragement help to replace the devastating despair that can accompany Rett syndrome with amazing hope, courage and love.

Paula Ernst (Aunt to Amy Adams, 5)

Just when I go through a crisis, you come out with new information, or a new book, or even just a story to remind us that our girls are always still going to be who they were meant to be, from the day they were born. Thank God for you.

Kandy Hallstrom (Katie, 16)

You truly are a lifeline. Your advice was definitely reassuring and so were your suggestions. You are such a support to all of us parents. I am sure you never realized you would have so many “children” to take care, but you do it wonderfully.

Pam Kaltmayer (Sara, 8)

'People come and go but some leave footprints on our hearts forever'

Carol Richmond (Hanna)

No one has been a better advocate, sister, or mother to all of us than you.

Maureen Woodcock (Erika, Rett angel)

I would not be able to stand were it not for you. The fateful call that brought me to your doorstep was the last act where I was just a dad. Beyond that instant I became a special needs parent. From the moment I left that message so late at night, never expecting to hear from anyone, only to have my new mom call me, I have been taken by you. You have carried me when there were no others. You have given me the guidance and wisdom to crawl when I could do nothing but weep. It took a couple of years but with your help I began to walk again. ~

Britt Van Giesen (Erika, 5)

“God has blessed you with the gift of nurturing and supporting others and you have taken his gift to the highest and fullest.”

Kristi Byers (Katelyn)

Thank you for making our family's life a little better, a little easier, for all you have done with the IRSA. Thank you for pouring your heart and soul into an organization that tries to balance the competing demands of caring today for the girls and their families affected by Rett, while pushing for a cure tomorrow.”

Heidi Willers (Abbey, 6)

Since the beginning for us twelve years ago, you were always there in those important and often desperate times, as well as times we just needed to talk. And I'm sure you will be in the years to come. You have spent so much of your life dedicated to helping us and our children. All I can say is thank you so very much! And we all look foreword to the good things to come. We grow together.

Evan Kelley (Jessica, 12)

“Thank you so much from my family, our gratitude and admiration for you is unending. I can not count the number of times you wrote or spoke just the right words when I needed them the most.”

Susan Dockter (Sara, )

“Thank you for your years of dedication, your hard work, and your unending love for our girls. When Audrey was diagnosed, my world caved in and I could not imagine how life would ever be ‘normal’ again. The day after joining IRSA, you called me and spoke with me for an hour. I still remember what you told me. You said that a year from then would be very different than it was that night. It has been almost two years since Audrey's diagnosis, and you were so right. We are happy people who see Audrey's potential and spirit and not her disability. We are so proud of her and think that she is just the best kid on earth. That phone call changed my life, literally. When I hung up the phone I saw light in the cave. George and I owe you so much for that. Our geneticist called recently to ask me if I would speak with another family who had just been diagnosed. I eagerly agreed and am awaiting their call. I plan to ‘pay it forward’. I will take the wisdom you have given and pass it on to others that need it. That is the best way I know of to thank you for all you have done. We are the ripples in the pond and you are the stone. You started something that is now so big and wonderful and powerful. You deserve to rest and look back proudly at what you started and know that we, the families and friends, will carry it on.”

Ann-Marie Kinzler (Audrey)

“You have changed the world, Kathy Hunter. You are rare, and a gem. You make God smile everyday, because you take every lemon thrown at you and make lemonade, you take every bit of trash that falls into your lap and you recycle it into something better, or if it can't be recycled you get up on a podium and tell the world why making this type of trash needs to stop. You hit life's curve balls out of the park! And if you miss a curve ball, you turn it into good story material. You are like humanized carbon -- under the pressures of Rett syndrome, you turned into a diamond. You let everyone know that nothing hurts so badly that it will keep you down. You survive, and inspire others in the process.”

Mickie McCool (Ellie)

“Thank you for the bottom of my heart for all that you did for Rett Syndrome over your lifetime. I am not sure where Briana and I would be today without you creating and developing IRSA which brought us answers, support, and hope. You are synonymous with Rett syndrome and your impact on so many lives is unparalleled. I only wish I can contribute to so many in my lifetime. You are an inspiration with a drive like any other I have seen. We wish you the very best with your future endeavors. From my entire family we thank you.”

Danny and Briana Warner

“As President of the Northwest Rett Syndrome Foundation I want you to know that your work to educate parents and professionals about Rett syndrome, through the indispensable ‘Handbook’, and IRSA meetings, is invaluable as we work to extend knowledge about Rett Syndrome. Your confidence that those with Rett are imbued with humor and intelligence and empathy for others, despite the limitations imposed by Rett syndrome, is contagious. Researchers, educators, physicians and therapists rely on your ‘Handbook’, and your example. A cure for Rett Syndrome will probably be discovered in the next 10 or 20 or 50 years. That will be a great day.”

Jack Bennett (President, NWRSF)

“Please know that I for one will visit your website often and continue to learn from you in the future as I have in the past. Be well and I know you will be busy.”

Mary Lou Oster-Granite, Ph. D. Intellectual and Developmental Disabilities Branch,
Center for Developmental Biology and Perinatal Medicine,
Eunice Kennedy Shriver National Institute of Child Health and Human Development,
National Institutes of Health