Tuesday, May 29, 2012

Interview with Diane from Reagan's Reach

Fellow PWS mom and friend, Diane, created Reagan's Reach along with her husband, Rob.
I wanted to interview Diane for us all to learn about RR. Here goes:

DITW: What is Reagan's Reach?

Diane: Reagan’s Reach was created by our desire to address the challenges that families face with the complexity of Prader-Willi Syndrome. Our long-term goal is to identify the needs of those living with PWS, in terms of the type of living facilities and community that will best enhance the individual’s quality of life. We have a vision of creating an environment that is flexible enough to provide a safe and self-fulfilling lifestyle that can meet the individual challenges for those with PWS. Reagan’s Reach is also committed to working in collaboration with communities to advocate, educate, and bring awareness to PWS. We are dedicated to help those with PWS reach beyond the medical diagnosis and maximize the quality of their life.

DITW: How did you come up with the idea for it?

Diane: Reagan was diagnosed with Prader-Willi Syndrome at four weeks old in 2003. As most families that have a child with this syndrome will tell you, it is staggering to hear the news that your baby is not going to have the life you had planned. The list of things that were wrong with our baby was long and, of course, we were totally devastated. In the beginning, we repeatedly asked ourselves, “Why did this happen to us, to our son?” But as time went on we began to ask, “Why not us?” While we have struggled through many obstacles with our son for the last eight years, we believe that there is a purpose for us; we feel that there must be something that we can do to help those with PWS. We both firmly believe that we were called on to reach out to others and offer our hope, optimism, and dreams.

DITW: How is Reagan's Reach different from other PWS and/or support groups out there?

Diane: We are not about specific age groups, geographical areas, or aligned with one national organization. We are about looking forward to develop a plan that will be able to meet the needs of the “younger generation” of those with PWS, like our son, when they are entering their adult years. Of course, we are similar to other groups when it comes to all that we can do to help bring PWS to the forefront and bring about more awareness to the general public. We continue to work diligently to make connections with local news media and other organizations that are interested in addressing the nation’s childhood obesity issues. We have also created relationships with other non-profits in our community that promote healthy eating and a healthy lifestyle, because of one of the main characteristics of PWS is the insatiable appetite. We have been pleasantly surprised at how our community has been supportive in getting the word out there about PWS, and in recognizing that there is a common thread in our missions.

DITW: What are some current events going on with Reagan's Reach?

Diane: We just awarded a Reagan’s Reach Scholarship for therapeutic riding. We asked families to provide an essay about themselves and the individual with PWS. We had a great response and it was a very tough decision to pick the recipient and wish we could have helped everyone that sent an essay.

We continue to make Jeweled Lighted Wine Bottles that we sell at local establishments, online, and by word-of-mouth. These have not only helped to generate funds, but also to provide a great way to raise awareness about PWS. The response has been wonderful!

Reagan’s Reach is hosting our first “Women and Wine Fundraiser” on June 4th, 2012 at The Powell Village Winery and Tasting Room, here in Ohio. The evening will begin with a wine tasting and appetizers, and then the women will make their own Jeweled Lighted Wine Bottle. This is a first of an ongoing series of these events that will help raise much-needed funds for Reagan’s Reach.

We are also forming a Reagan’s Reach team to help raise funds for the Ohio One Small Step Walk (Foundation for Prader-Willi Research) on June 30th, 2012. Our goal is $500.00, we are almost there! If you are local, join our team! Yes, that was a shameless plug…

Additionally, we are working towards an annual signature fundraising event where we can team up with other sponsors in support of our mission.

DITW: Where do you see Reagan's Reach going in the future?

Diane: As mentioned earlier, our focus is the future. As the younger generation of individuals with PWS get older, we want to be able to meet their needs. This may be a “brick and mortar” community for housing. It could be a self-sustaining village environment, with opportunities to work, volunteer, or just be a part of a family. Our biggest challenge is, and will continue to be, developing a plan that is flexible while maintaining a focused goal.

DITW: Tell us a bit about Reagan and how PWS has influenced your lives.

Diane: Reagan has brought so much to our family. We have always been what I considered a healthy, active family. When he was born... we felt like he fit right in, but we definitely kicked it up a notch or two. Today, we understand the importance of knowing what is in the foods we eat, and the impact of the calories that go into our bodies. Reagan has also learned to read labels; he knows more about nutrition than most eight-year-olds. It is really quite amusing -- during his breakfast he reads out loud the calorie count on the yogurt container. He already has a good understanding of the ingredients in his food. For example, he knows the difference between regular table sugar and high fructose corn syrup. In that respect, it has been a plus. The minus is that he knows terms like glucose and metabolism. He is all too familiar with a butterfly needle and blood draw. He knows way more medical terminology than a child his age should know. He is also beginning to inquire more about Prader-Willi Syndrome. He knows he has it, he will tell you, “I have Prader-Willi Syndrome, but I just have a little bit of it.” It breaks my heart. What he doesn’t know is that PWS is so much more than eating healthy, and that it is a lifelong struggle that he will have to deal with long after we are gone. We want to be sure we had laid the plans for him, so that he can live a full life despite PWS. There is so much hope for answers through research, and we remain very optimistic about his future.

DITW: Anything else you'd like to add?

Diane: We live just outside Dublin, Ohio. We have been married for 13 years and have five children from ages 26 to 8 years old. Our youngest child, Reagan, has PWS. He is in second grade and doing well. Reagan has worked very hard to be where he is, it has not been an easy task. We have had to face the challenges with developmental delays, behavioral issues, and the enormous task of finding resources for Reagan. We have spent many hours educating those that work closely with Reagan in the school and also with home care providers.

Rob currently works for an architectural firm designing commercial restaurant kitchens. Diane worked in accounting for a financial planning firm until she became a full-time advocate for Reagan. Rob and Diane served on the Prader-Willi Syndrome Association Chapter of Ohio for three years prior to founding Reagan’s Reach, a non-profit organization.

Reagan's Reach's Facebook page can be found HERE. Thanks, Diane!

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