Have a Heart for EB!

(to view more pictures of the event, click the picture above)

In February, DebRA of America and National Rehab teamed up to present, "Have a Heart for EB", an event that was held at Disney World in Orlando, Florida. Through a generous grant from National Rehab, EB families were given three complimentary 2-day tickets to any Disney park they wished to visit during Valentine's Day weekend. EB families from all over the country came to the event. DebRA and National Rehab held a dinner as well for families to get together and the children were able to play and do crafts. This was an exciting time for Maxx, as well as other EB children! The park offered services to those children who were in wheelchairs, had feeding issues, etc. Disney was very gracious to our EB families!

(Maxx & Rylie enjoying craft time after the dinner)

Miami Valley Hospital Foundation

Tiffiany Schramm (Miss Ohio) and I met with Jenny Lewis, who is the director of the charitable giving foundation for Miami Valley Hospital in Dayton, Ohio. In 1983, the Miami Valley Hospital Foundation was established as a separate, non-profit 501(c)3 organization to raise funds and awareness for patient programs and services that are beyond the scope of the hospital’s budget through annual mailings, grant applications, endowments, maintenance of gift funds and exciting events. The Foundation raises funds to enhance the quality of life for patients and families.

An upcoming event that my family and I will be participating in for the Miami Valley Hospital Foundation is the Clemens Cycle for Cancer, which celebrates the inspiration and memory of those who have fought, continue to fight or have lost the courageous battle against cancer, including Richard and Nancy Clemens. Clemens Cycle for Cancer supports research and education that advances treatment options for cancer patients and their families at Miami Valley Hospital. You will enjoy scenic cycling, food, refreshments, family fun and support.

We will be able to ride with our children in the bike trailer 10 miles through the Dayton communities. Our ride will be dedicated to my Grannie who has "lived" with colon cancer for over nine years, as well as Mark Willis, who was just diagnosed with throat cancer. Both of these people are extremely close to our hearts. For more information of the Clemens Cycle for Cancer, click the link below.

Interview with WDTN Channel 2 News About Epidermolysis Bullosa

In the fall of 2005, Channel 2 News in Dayton, Ohio came to our home to interview us about Maxx and EB. This aired the weekend of Thanksgiving, so it reached many people. It was amazing to hear from people who wanted to know more about epidermolysis bullosa and how they could help. We were even able to connect with two adult sisters living with EB who were from the Miami Valley! More awareness raised means we are one step closer to a cure! When I watch this video it makes me smile at how "little" Maxx was. He is 6-years old now and such a handsome young man and a great big brother! Click the link above to view video.

Ohio International Video

Check out the new Ohio International Promotional Video! Click the picture to view!

Satya Jewelry's EB Butterfly Collection

Purchase

SATYA JEWELRY, along with COURTENEY COX & DAVID ARQUETTE, has added a beautiful new line of gold & silver jewelry to their exclusive EB Butterfly Collection. The Satya Butterfly collection now includes a full line of gold and silver earrings and necklaces. The unique etched butterfly design was chosen because it is the symbol of hope and freedom. Committed to creating beautiful and distinctive jewelry, as well as making a difference, Satya Jewelry joins the mission to find a cure for EB.

Twin Valley South Middle School Students Raise Awareness & Funds!

I find myself in front of many different groups of people, but no group has been more gratifying to speak to about EB than young adults. I am a school teacher, so I have the opportunity to influence the children of tomorrow in positive ways. In 2006 my middle school students approached me to inquire about how they could help raise awareness and research funds for DebRA of America. It was my first year teaching in the district, after transferring from a nearby district. They knew my son was diagnosed with EB at birth and wanted to help with the cause. They held a bake sale and penny drive for EB! The student senate members also handed out information about EB and DebRA of America to the entire school in order to raise awareness. In all, the middle school students donated just over $500!! These are some of the most amazing young adults! (pictures are used with permission of parents/guardians)

Fraternal Order of Eagles donate to DebRA of America!

In September, the Gratis, Ohio Fraternal Order of the Eagles held their annual cornhole and Monte Carlo tournament. You can imagine my family's excitement when we received the call to tell us that the organization we work so hard for was the charity they decided to donate the proceeds to! The side streets were closed off in order to accommodate the 200 hundred people in attendance that day. My family set up a table of literature/information for DebRA of America, as well an example of a newborn care package that we send out. Many people asked questions about EB and what they could do to help the cause. Maxx was in attendance and even threw a couple bean bags! It was a beautiful day of fun, fellowship, and GIVING! The Eagles donated $4000 to DebRA of America!