Adult Resource Board
Following the SPIRIT (Strength, Purpose, Independence, Resilience and Initiative Together) meeting for adults with MPS and related diseases held at Disneyworld in December 2014, the Adult Resource Board was developed. The attendees at the SPIRIT meeting requested a forum whereby their voices could be heard both within the Society and for planning future SPIRIT meetings. The group quickly developed and began a series of conference calls to determine goals and objectives. Some of these include helping adults with issues such as transition from teenager to adult, medical problems and costs, jobs and relationships. They are also interested in serving as mentors to our younger population and providing helpful information to parents. They have requested that conference speakers address adult issues and hope to host a conference session.
The first meeting of the representatives of the Resource Board will be held in conjunction with our 29th Annual Family Conference this September in Salt Lake City. The Resource Board will also host a concurrent session Saturday afternoon.
We’re delighted to introduce the Adult Resource Board representatives!
Adult Resource Board
|A native of Vermillion, South Dakota, Gottsleben is currently the Marketing Communications Specialist for the Center for Disabilities at the USD Sanford School of Medicine. She holds bachelor degrees in both sociology and psychology from Augustana College, Sioux Falls, South Dakota. In 2002, she participated as a patient in the phase II enzyme replacement-therapy research for Mucopolysaccharidosis, Type VI (MPS VI) at the Children’s Hospital Oakland, Oakland, California. Rather than dwelling on the obstacles that her condition presents in her day-to-day life, she defines herself by a positive outlook and by achieving success in overcoming challenges.
Gottsleben currently serves on the Sioux Falls Disability Awareness Commission and the South Dakota Governor’s Board of Vocational Rehabilitation. She is a committee member for the Americans with Disabilities Act (ADA) 25th Anniversary Celebration and the Dow Rummel Village board. Gottsleben additionally chairs the annual Sioux Falls ArtAbility Exhibit event and co-chaired the 2015 Miss Wheelchair South Dakota pageant. Since June 2011, she has mentored young adults with disabilities as a staff member at the annual South Dakota Youth Leadership Forum. In 2013, Gottsleben was highlighted as one of the “Young Leaders of the Year” by 605 Magazine; she has been a TEDx featured speaker and was nominated for the YWCA Tribute to Women Award – Tomorrow’s Leader. She has self-published two books, Live Laugh Lemonade: A Journey of Choosing to Beat the Odds, and a children’s book, Kendra’s Lemonade.
|Hello, my name is Jenny Klein. I’m originally from Michigan, however, I currently reside in Raleigh, North Carolina. I’m 23 years old, and I am a senior at North Carolina State University. I study human biology and hope to attend medical school in the future. At the age of nine I was diagnosed with Mucolipidosis (ML3). I’m thrilled to be working with a wonderful group of adults who want to provide a loving and caring environment for all affected adults, as well as a support system for each other. I'm excited the resource board is here to help initiate change and encourage all affected adults to be their own advocates and voice their own opinions.
|Jason Madison is an adult with a mild form of MPS 2. He was born in Nyack, NY in 1976, but was raised in Cortland, NY after his family moved there in 1980. After graduating from high school, Jason got an art degree from Syracuse University. He then moved to Brooklyn, NY for ten years working as an Art Director and Graphic Designer. In 2009 Jason moved back to Cortland because of a combination of the financial aspects of the recession and needing to be close to family because of health issues that finally needed to be addressed. These included an umbilical hernia, and bone lesion on his left knee, and a spinal decompression that resulted in seven vertebrae being decompressed and fused. After he recovered enough Jason decided to go back to school for marketing at the College at Brockport, in Brockport, Ny where is set to graduate in May of 2015.
Jason loves to draw comics (being a cartoonist for both the SU and Brockport Student papers) play music and perform. Some of the acts he has been involved in include the pirate band “The Scurvy Pirates” as well as several rock bands and performances in off Broadway productions. He’s got some stories and loves to share them to people willing to hear them. Jason is hopeful his best days are ahead of him as well as for all member s of the MPS Society.
I’m Samantha Slawson. I have MPS 1. I am a 23 year old from Southern California. I am currently a college student working toward my Psychology and Child Development degree. I hope to become a Child Life Specialist, and help children through the struggles of growing up in a hospital. I have been a volunteer for the Make- A- Wish Foundation for the last 4 years. I consider myself a fanatic for Disneyland, corgi’s, and pizza.
My name is Fanny Zambrano I am 40 yrs old and diagnosis with Morquio at the age of 5-6 yrs old. I am the only one affected out of nine siblings which I am the baby. I was born in Chicago IL and move to Texas at age 12. My mother is from Mexico and my father from Ecuador... yes Multi - culture !!! I attended regular school and graduated from the DeVry Institute of Technology with a B.S in Business in Administration of Operations. I am a full time employer and have been in the Workers Comp Insurance industry for fifteen yrs.
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