Family Support Board
Providing accurate, well-organized, sincere support, information and referral services is the number one goal of the IRSF Family Support staff for all families, from the day they begin searching for a diagnosis through coping with day-to-day care issues after the diagnosis and beyond. The highly respected Family Support Board (FSB) consults with the IRSF staff on these priorities.
IRSF Family Support Board members are active, passionate, committed volunteers who have a family member diagnosed with Rett syndrome and a desire to affect change on behalf of those living with Rett syndrome. They have both personal and professional skills to best represent and advise the IRSF staff and Board of Directors on issues affecting all families touched by Rett syndrome. They also serve as representatives of IRSF, promoting IRSF’s vision and mission to the larger Rett syndrome community.
The standard term of service for the Family Support Board is three calendar years in length. Members can serve up to 2 consecutive terms of service. They are welcome to reapply for board service once they roll off for at least one term. The option to reapply for a second consecutive 3-year term is possible if conditions of service were successfully met in the first term.
Questions? Contact Paige Nues, IRSF, Director of Family Support, at firstname.lastname@example.org or (510) 499-3858
APPLY BY OCTOBER 25th FOR A POSITION ON NEXT YEAR'S FAMILY ADVISORY BOARD
FAB 2014 Application
Meet your 2013 Family Advisory Board members
Daniel Warner, Chair
Daniel Warner is father to Jaidyn (age 9, R270X). He lives in Southern California with his wife, Briana and youngest daughter Emory (6). Jaidyn was formally diagnosed in March 2005 but had been in early intervention therapy since she was 1 year old. Jaidyn is a happy and healthy girl who loves horseback riding, music, Disneyland, snow skiing, tubing, 4 wheeling, McDonald’s double cheeseburgers, and her sister. She is daddy’s girl but surrounded by a very supportive and loving family.
Jaidyn gives back to the Rett Community in many ways including participation in the Natural History Study and doing such things as Locks of Love. Jaidyn and her family are active in many fundraising and Rett events including Rett golf tournaments, Strollathons, Local Picnics and Fundraisers, to acquiring corporate donations for IRSF.
Daniel is a Sr. Sales and Management professional who is the Director of Sales for Valassis Digital Media. He brings strong leadership skills to the FAB. Daniel has been active in fundraising and awareness of Rett Syndrome for the past 6 years.
He is excited to give back and represent the families that are affected by Rett Syndrome. He can be reached at email@example.com.
Victoria Kirihara, Secretary
My husband, Herb, and I live in Honolulu, Hawaii with our daughter Michelle and three special dogs. Michelle has three sisters, a brother, and two nephews, Noah (8) and Logan (6). Her one younger sister, Nicole, with husband, Travis, visit Michelle weekly for Sunday Dinner, helping her to eat or just sit to ‘talk story’ or play with the dogs.
When Michelle was born, 1977, no one heard of Rett Syndrome. She was a beautiful doll-like baby. Then, at 9-months, after a few months of concern about her development, she was hospitalized for ‘failure-to-thrive’. This was only one of many subsequent diagnoses some of which included ‘mother’s psychological rejection of child’, Cerebral Palsy, and Infantile Autism. It was not until 1988 at a school re-evaluation meeting that Rett Syndrome was discussed. The teacher had a video from a conference of a child with Rett Syndrome that could have been Michelle’s twin. Later that year Michelle’s neurologist confirmed a diagnosis of Rett Syndrome. At the time there were no tests, no markers, just observations of behaviors. My science background helped me with the needed objective observations.
Presently, I am a retired education administrator. As an elementary vice principal, I led many of the most challenging IEP meetings. Then as a district level administrator responsible for a complex of ten schools, K-12, I assisted each principal with needs in the area of school improvement, renewal, and adherence to legal requirements including those for the special needs population.
Finding another girl with this same rare syndrome on a small island is almost impossible. Our service agencies typically serve a wide variety of disabilities. I like that. As an example Michelle attends the monthly beach event put on by AccesSurf. It is heartwarming when, with the help of six volunteers, they are able to customize a surfboard for Michelle to lie on and ride the wave with the surfer behind her. Her tight hand clenching is a great asset to this activity.
Over the years I have volunteered to a variety of charities. Some examples of boards I have served on include: Past President Hawaii Society for Autistic Citizen (During my stay, the society proudly received a national award for our adult vocational program.), Therapeutic Horsemanship for the Handicap (Michelle rode in many Aloha Day Parades), HI Dept. of Health DD Division, Human Rights Committee, and Assistive Technology Resource Centers of HI. I am a puppy raiser for Hawaii FIDO, the only organization that trains and certifies service dogs in Hawaii. Michelle loves the dogs; they get her to smile. Michelle’s agitation makes it difficult to fall asleep. The dog will get in bed, tap her legs and then snuggle with her. With that Michelle lets out a giant sigh of release, smiles, then closes her eyes and calmly goes to sleep.
Given all my service to local charities I think it is time that I give to such a worthwhile organization as IRSF. I hope that my experiences will be helpful in moving this advisory board to productive endeavors and supportive to individual families.
Clifford L. Fry, former Chair of FAB, is currently the IRSF representative for adult issues. Clifford is the father of Ashley Fry, a 33 year old beauty with Rett Syndrome. Clifford and his wife, Judy, and Ashley attended the first conference of the International Rett Syndrome Association, a forerunner of IRSF. Clifford was on the first board of IRSA for approximately five years. During this time he and Judy and Dr. Alan Percy sponsored the Houston IRSA conferences for parents, combining medical information with fun events, that set the pattern for many subsequent conferences. Clifford and Judy were Texas representatives for years, during which time they talked with many parents and got Ashley involved in several research studies at the Rett Center in Houston. Clifford helped get then Governor George Bush to declare October to be Rett Syndrome Awareness month in Texas, one of the first states to have such a declaration. As Chair of FAB in 2010, he advised those in other states about how to obtain their state proclamations. Clifford nominated Dr. Huda Zogbhi, who discovered the gene responsible for Rett Syndrome, for the Texas Women’s Hall of Fame, a rare award given only every other year, resulting in her acceptance and induction. Clifford has a Ph.D. in Economics from Texas A&M University and has been a professor at the University of Houston, Washington State University, and Texas A&M University. Clifford has worked in commercial banking and at the Federal Reserve Bank of Dallas. Clifford currently works as an Economics consultant at RRC, Inc. in Bryan, TX. Clifford, Judy and Ashley reside in College Station, TX. Clifford is enthusiastic about the opportunities that IRSF provides for those involved with Rett Syndrome. Clifford is devoted to helping FAB assist the IRSF Staff and Board to achieve the IRSF objectives of helping families with Rett Syndrome and finding a cure.
I am Connie Lindberg and I live in Minnetonka, Minnesota with my partner Steven Langsdale. As of the first of the year, we are officially empty nesters! I have two daughters Nikki who is married and has blessed me with 2 granddaughters and another grandchild on the way. My youngest Kelsey is a recent graduate and this past year was involved in the Pepsi Refresh program with IRSF.
Sara Brinkhaus is my grand niece and in 2000 she was diagnosed with Rett Syndrome. Her parents Dan and Lisa Brinkhaus founded the Minnesota Rett Syndrome Research Association (MRSRA) in 2001.
One the major fundraisers for MRSRA is an annual golf tournament. I can remember the first year so clearly!! We were at a smaller golf course and the banquet room had to be cleared of dishes, glasses, etc. before we could even attempt to set up for our event! The weather was not cooperating and some the golfers claim that they had snow on the course. A group of very dedicated volunteers did everything, setup, cooking, silent auction, you name, we did it. The golf tournament has since grown with moves to bigger and better courses.
I will be the first to admit that my personal involvement with fundraising and spreading Rett awareness was minimal. As the tournament grew, I continued to help with the banquet room setup and other than that I was a guest at the event. I wanted to do more, but was stuck on the idea that I needed to help in a monetary way and I just plain could not.
July of 2010 changed that! IRSF was competing in the Pepsi Refresh program and my niece Lisa had posted on Facebook to vote for Rett syndrome. Being the competitive person I am, I jumped in! I started watching the comments posted on the Pepsi page for Rett and made a random phone call to a group that was voting for Rett. Let’s say my life took a wild turn! That phone call connected me with Mickie McCool and Donna Wright.
I was asked to be part of the committee to help IRSF win the 250K. My family would say that I was obsessed with the contest; I would argue that I was driven! I joined the Rettnet and started my Rett education. While I am not a parent of a Rett child and do not know the struggles personally, I am learning via the posts. There are some that make me smile, some that make me laugh, some that make me mad and way too many that make me cry.
I originally became involved in this contest to help Sara, but the deeper my involvement, I found I was in it to help Katie, Ellie, Ashley, Lena, Darleen, Naomi, Adrianna, Jordan, Cindy, Erin, and so many more.
The win for IRSF was bittersweet to me. I was joyous for the win, but sad that my involvement was coming to a close. Several people suggested I apply for the Family Advisory Board. I am grateful and excited to still be part of the “team” and look forward to continuing the drive to a cure.
My name is Deberah Patterson. My husband, Patrick, and I live with our three children (Brandon, Ashley and Caitlyn) in Houston, Texas. I have been in the legal field for about 20 years. I began my career at ExxonMobil in 1990, moved on to several different law firms and currently work in the legal department at Pride International, Inc. I volunteer in the children’s ministry at my church on Wednesday nights and Sunday mornings.
When our youngest daughter, Caitlyn, was 15 months old, we noticed she wasn’t developing typically. During the following three months, as we carefully and prayerfully watched, Caitlyn showed no improvement. At 18 months, on her pediatrician’s recommendation, we decided it was time to have her tested. In September 2006, when she was 20 months old, we received the diagnosis of Rett Syndrome (R168X). Naturally, we were devastated by the news, and we knew that it would change our family’s lives completely.
Without a doubt, coping with Rett has been an emotional battle and a constant adjustment. However, through this hardship, we also have experienced many blessings. We have met and developed friendships with other families going through the same struggles that we would not otherwise have met. Just one week after Caitlyn’s diagnosis, we attended our first fundraiser for Rett -- Kevin Black’s annual golf tournament -- and we came away with a desire to work with other families to raise awareness and funds for Rett. Since then, we have volunteered each year at Kevin’s golf tournament, and this past year (2009), I served on the committee to help organize Houston’s first Rett Strollathon. I am excited to be a new member of the FAB and look forward to working with other board members and IRSF to provide information on support and services to families on their Rett journey.
I am proud and excited to be a 2012 elected IRSF Family Board member. I am the grandmother (lovingly called Nunna) to Caroline King, Atlanta, Ga.
We came into this unknown family of Rett Syndrome when Caroline was diagnosed in March, 2011 at 4 ½ years old. After several years of searching for answers, we finally knew what the cause behind her developmental delays was. As a former elementary teacher, I knew something was not right but never suspected the severity. When we received the formal genetic results I knew my daughter and son-in-law were on a journey no one is prepared for and realized I had to step in and get everyone involved with a support organization. How lucky we were to immediately find IRSF.
Caroline has 5 BOY cousins so she is the Princess that doesn’t talk back but she sure lets them know what’s on her mind and what she wants – and of course they jump to her beckon call.
I knew that we all needed an education on what we were experiencing and what was a head living with Rett Syndrome and the place to do that was the Family Conference in Boston. It was there that I knew I was hooked and part of a warm, loving group that would support us throughout the coming years.
Donna Wright raised five children in northern Michigan, her home state until she moved to Warren, Pennsylvania with her life partner Bob Dean, an oil and gas industry executive, in 1998, along with her two stepdaughters. She has thirteen wonderful grandchildren, including Naomi, age 11, who was diagnosed with Rett in 2007. She travels back to Michigan often for extended visits with her family there.
She admits that before Naomi’s diagnosis she had never even heard of Rett syndrome, and this has motivated her to do all she can to spread Rett awareness, not only to individuals, but to entire communities, including politicians and medical professionals. In 2009 she became the IRSF’s Grandparent Representative for the Mid-Atlantic region. That year she spearheaded successful efforts to obtain gubernatorial October Rett Syndrome Awareness Month (ORSAM) proclamations from Pennsylvania, West Virginia, Alabama, Alaska and Delaware. After winning the Pepsi Refresh contest in September, 2010, she was again instrumental in assisting and obtaining governor proclamations in 28 states. New Jersey has a permanent Joint Resolution No. 4. She continues to be active with the ORSAM proclamation campaign effort and assisted in obtaining governor proclamations in 23 states, along with city and county proclamations in four states for 2013.
Donna believes that raising awareness is a crucial factor in improving Rett treatment and soon, she is confident, a cure. She states she feels fortunate to have the opportunity and the energy to devote to that goal. Donna is devoted to spending much of her time in contact with other Rett families across the country, providing information, support, and her message of hope.