"My Life" Magazine Featured our Family for their November Issue

Mats Wilander Tennis & Golf Classic

I recently attended DebRA of America's national fundraiser at Westchester Country Club in New York, the "Mats Wilander Tennis & Golf Classic". Mats and Sonya Wilander's son, Erik was born with EB simplex and the event is DebRA of America's biggest money maker for research and education. Will and Vivica Ferrell were among some of the evenings most famous people attending the event. Roger Waters, from Pink Floyd was also on hand to sign a guitar and auction it off for $6000. It was amazing to see so many people in one place who shared one common purpose...........raising money for EB research and education. It was a lovely day filled with tennis and golf and the evening was just as exciting with a cocktail reception and silent auction, followed by dinner, a live auction, and dancing. I also had the chance to thank Hollister Woundcare for sponsoring the back inside cover of the International Pageant program book in Chicago. I presented them with a framed version of the page while at the dinner. Thanks Hollister! After dinner, DebRA of America presented an award to a young man who battles EB on a daily basis. EJ spoke to a crowd of about 200 guest and there was not a dry eye in the house after he finished. He is an inspiration to us all for his courage and strength. This is what all the hard work is for!

Tyler Fisher Spaghetti Dinner for EB

My family and I traveled to Columbus on Saturday evening for a spaghetti dinner to raise more awareness and funds for EB. The Columbus family lost their son, Tyler to the Recessive Dystrophic type of EB over 10 years ago. Trisha Wirick, who is the aunt to Tyler was the organizer of the event. There was a silent auction, delicious food, and donated baked goods from the Brice United Methodist church women. Maxx and Anna played and played with all the kids, while my husband and I talked with family members and visitors.

I was able to sit down with Tyler's mother, Lori for a while to talk to her about EB, Maxx's current situation regarding EB, and just how hard it was to lose her son to this devastating disease. Even though it has been 10 years, her pain is still fresh and just talking about him brought tears to her eyes. I was able to speak with her about all the wonderful opportunities she has with DebRA of America. She is ready to start volunteering, spreading awareness, and helping to find a cure.

Trisha Wirick, who is the aunt of Tyler is one of the most sincere and genuine people I have ever met. She told me a story about what led her to Brice United Methodist Church, and ultimately Tyler...........it touched my heart so much. You are doing a great thing Trisha! Thank you so much for including my family and I in your wonderful event! PS........and thanks for all the yummy spaghetti!

Preble County Pork Festival

I visited the Preble County Pork Festival this weekend where pork was definitely plentiful! I learned that the festival brings in about 16, 000 loins, which produces 70,000 pork chops! The food was delicious! I got to spend the afternoon with the reigning Miss Ohio America, Erica Gelhaus. I had the opportunity to listen to her beautiful voice as she sang opera for the fine folks of Preble County. She was amazing, and I am cheering her on all the way to Vegas for Miss America! She was a delight to get to know! We were both in the parade and the people of Preble County embraced us with cheers and smiles!

The 1st Annual Tyler Fisher EB Awareness Dinner & Auction

October 10, 2009
5pm-7pm

Brice United
Methodist Church
3160 Brice Rd
Brice, OH 43109

Price
$8 Adults
$5 Children

Call Trisha Wirick @ 614-353-1573
For Tickets or More Information

Click link below for full story:

Special on TLC about Epidermolysis Bullosa!

Next Wednesday (September 16, 2009) on TLC at 9 p.m., please watch "Truth Be Told - I have a child with Special Needs". A family with EB will be featured. The child featured in the special is in Minnesota right now undergoing Bone Marrow Transplant for EB. - please watch TLC on September 16th to learn more about EB.

Mrs. Ohio International Interview at Fifth Third Field

Please watch the interview by clicking the picture above!

Dragon's Game!

Last night I had the opportunity to throw out the first pitch at Fifth Third Field for the Dayton Dragons as Mrs. Ohio International! My family and I were escorted down the tunnel that the players come out of. We went through the dugout and out onto the field! There were close to 8,000 people in attendance! It was such an amazing experience! Maxx got to meet Heater and Gem (Dragon's mascots) and my husband was so proud of me! Inquiring minds wanted to know if I “made” it to the plate. I did in fact have a talk with the catcher before hand. I told him not to make me look bad. He laughed, and said, “No problem”. I even got to keep the ball for a memento! Chris A. came and photographed me while I was at Fifth Third Field. He is an amazing photographer who really has an eye! He is also putting together an interview piece for me where I talk about EB and the research foundation. Please check out his work!

http://public.fotki.com/rockwriter/dragons/

Clemens Cycle for Cancer

Today my family and I enjoyed an early morning bike ride with almost 200 other bikers from across the Miami Valley. It was a beautiful day for the Clemens Cycle for Cancer! We rode in honor of my Grannie and Jason's cousin Mark, both of whom are living with cancer today. I cannot explain the overwhelming feeling that came over me when everyone took off on their bikes together...........I had a lump in my throat as I thought about those living, beating, and who have lost the battle to cancer. The ride was 10, 25, or 50 miles. We opted for the 10 mile ride since we had our 6 year old and 17 month old with us! We took two wrong turns and instead of a 10 mile ride, it turned into more like a 15 mile ride.............oh well..............better exercise for the day! A special thanks to Jenny Lewis (CEO of the Miami Valley Foundation) for being so hospitable to my family! Oh, and the highlight of Jason's day was going to Dick's Sporting Goods (it was 2 stories)...........after the ride! It's the little things that make the hubby happy, you know?

P.S. Anna fell asleep on the bike ride, and she was still sleeping when we crossed the finish line.........see the picture below!

Everyone Loves a Wedding!

Since I have returned home from Chicago, I have been busy getting my calendar set for the upcoming year as Mrs. Ohio International. My family and I are making plans for traveling this fall and winter. We will be going to New York for DebRA's annual fundraiser, which is a golf and tennis classic. We will also be traveling to Michigan for the EB Butterfly Ball to celebrate the lives of children and adults afflicted with Epidermolysis Bullosa. I am also working on going back to Chicago to present Hollister Woundcare with a special plaque for sponsoring me and supporting me on my journey as Mrs. Ohio. In the middle of all this, I am returning to work this fall as a middle school math teacher. It is going to be busy, busy, busy!

Last weekend my cousin, Patrick got married. The ceremony took place at a lovely outdoor venue, and my children enjoyed running around and above all, dancing the night away! I have posted pictures to share with all of you! Have a great weekend everyone!

Exemplary Attainment from the Ohio Senate

Today I was awarded for exemplary attainment by the State of Ohio Senate. I received a certificate in honor of my work with EB and DebRA of America, as well as becoming Mrs. Ohio International 2009.

"An intelligent, motivated, and personable woman, you have worked diligently to develop your knowledge and skills, and as a result, you were named Mrs. Ohio International 2009. In all of you endeavors, you have amply demonstrated your ability to meet challenges with enthusiasm and confidence, and we applaud you on your tremendous efforts."

~Senator Bill Harris, President of the Ohio Senate

~Senator Keith Faber, Majority Floor Leader

Mrs International Pageant 2009

Stephanie Gaines (Mrs. Missouri) evening gown winner

Mrs. International 2009, Armaiti Shahidi Fitzgerald



My Aunt Sandy and I after the pageant


On stage after prelims on Friday


Mrs. International opening number dresses........love you girls!

My fabulous and loving husband, Jason (Mr. Ohio)


Meet and greet before the prelims with my sponsor Hollister
and DebRA of America, as well as my directors and husband.

My beautiful sister, Brigette!

I have returned home from the International pageant in Chicago! What an amazing experience it was! I met so many fabulous women who had special stories to tell. I loved getting to know everyone and especially understanding why everyone was there............it was really moving to talk to people about their messages. There were cancer survivors, stroke survivors, those who knew others affected by heart disease, or suffered from heart disease themselves, volunteering for the United Way, the YWCA, foster/adoption awareness, CASA........all women were there for a purpose..........to share their life long journey of philanthropy with others. I grew as a person and as a wife and mother during my week. I learned that there are so many others making differences in their communities and beyond!

I cannot mention all women I met, but a few that I got to know during the week were; Deanna Linz, Mrs. Alabama-you are an inspiration to your son and family, as well as other mothers dealing with medical issues and their children. Mellissa Zwilling, Mrs. Southern States- Wow! You are poised and very well spoken......you have won the battle and are a mother to a beautiful little girl! My roommate, Mrs. Washington D.C. Diane Lebson........a girl could not ask for a better roommate than you. You were so gracious to me all week and I will be grateful to you forever! Last, but certainly not least..........Adrienne Waston Carver, Mrs. Maryland. I have found a friend in you.....one that will last a lifetime I am sure! We were brought together and shared so many stories throughout the week. You inspire me, your story moves me, and I am so happy for all of your accomplishments! I love you girl!

I would be lying if I said I wasn't emotional about not getting into the top ten, but it was not meant to be. I loved every second of my journey, and I know in my heart that my work is not done, and nor will it ever be. My son and other EB sufferers need me. My family and I will continue to spread awareness and raise research dollars! Thank you to my family, friends, DebRA of America, and Hollister for making this week special for me!

My beautiful sister gave me a special gift after the pageant on Saturday evening. It was a necklace with a single pearl, and the message it represents is this:

One in a Million

Embrace your individuality! You are the best "you" there is.

Let your necklace be a reminder to stay true to yourself.

You are one of a kind!

Brigette, I love you with all of my heart. You are an amazing sister and I thank God everyday for you! Thank you!

Day Four in Chicago.....Prelims

Hello all! What a busy day Friday was! We were in rehearsals all day, and then our lovely husbands arrived to practice their part of the show...........evening gown. I was so happy to see Jason. I have missed him this week, as well as my children. Prelims were amazing! Everyone was so excited and looked stunning! Mrs. Middle East won the photogenic award. She is a lovely women with a great message about oral cancer. The end of the show was very emotional for me. I don't know what came over me, but when everyone stood up and applauded, I felt a wave of emotions. At that moment, I thought how lucky I truly was to be standing on that stage with 47 other women who were all there to tell others about their passion and work in life!

Day Three in Chicago....Interviews/Formal Night

Good evening all of my lovely friends and family! It was a fabulous day in Chicago today! Interviews were today, as well as the formal dinner and meet and greet with the Chicago Chamber members. My interview time was not until 1:50, as I am contestant 43 out of 48! I went to sleep last night thinking how nice it was going to be to snooze in, but my internal alarm clock kicked in at 6am..........so I got up and took my run. It was nice to be able to be leisurely this morning. I did a little shopping and then came back to get ready for my interview; what a GREAT interview it was! The judges are fantastic and made me feel very comfortable! I left feeling not only confident, but extremely happy that I was able to speak from my heart about EB and what becoming Mrs. International would mean for DebRA of America and EB sufferers.
We rehearsed for a couple of hours and then it was off to get ready for the dinner. We had a meet and greet with the Chicago Chamber of Commerce members, followed by a group picture in front of the theater. Dinner was at the top of the hotel in the Monaco room, which has a stunning view of downtown Chicago! I sat with a group of women that I have not had the chance to get to know yet, so it was great hearing every one's story. My table played a fun game during dinner with Q & A. "Describe your husband in one word" "If you could have any dream job, what would it be?" This created laughing, crying, and above all speaking from the heart. I keep saying this, but I am so happy I have this opportunity...........it is and continues to be amazing! Prelims are tomorrow!

Day Two in Chicago!

Today was a fun and exhausting day! I was up at 5:15am to do my morning run, only to find out it was pouring out, so..........I headed to the workout room in the hotel. I met Deanna Linz who was also working out. We made a connection, and I was able to get to know her more today. She is a great lady! I also got to know more about Mrs. Southern States and Mrs. Pennsylvania...........both of whom are also fantastic women! We boarded the bus for a tour of downtown Chicago at 7:45am. We took a double decker bus tour of the city and learned about the architecture and history of the city. I loved it! We also got to enjoy some shopping on Michigan Avenue as well! I didn't buy a thing...........I know, that's crazy isn't it?

We returned to the hotel for a make-up seminar and then we were off to rehearsals! We learned the opening number, and it is fabulous! The women were all great and so caring to one another. What a great experience this has been so far! Interviews are tomorrow..........followed by more rehearsals and a meet and greet with Chamber members and judges. Time is flying! While I have only been here two days, I have learned that not only do we wear a crown atop our heads, but all of us wear a crown on our heart !

(Pennsylvania and Ohio)

Day One in Chicago!

I arrived in Chicago today and already, I have met some fantastic ladies! My roommate is Diane Lebson, Mrs. Washington D.C. She left a beautiful note and gift for me when I arrived. I look forward to getting to know her better! I was able to make contact with a few of the women through FB a couple months back. It was so great to meet them in person! I am so excited to be here representing Ohio and DebRA of America, but I am especially happy to be able to spread the message about EB and my son Maxx! We have orientation this evening, and I am looking forward to meeting all the ladies. I will be up bright and early tomorrow morning for my run, and a tour of the downtown Chicago! I will post more pictures tomorrow...........more of the other women, touring, etc. I love you all for the tremendous amount of support you have given me and my family!

EB Advocate Newsletter

National Rehab has stepped up its efforts to provide support to and connect with EB families in several ways, including establishment of a group on Facebook.

EB Advocate Electronic Newsletter

If you or someone you know has EB, you may have already received our electronic newsletter called EB Advocate, which contains helpful information, not only in supporting treatment, but also in dealing with such issues as insurance coverage and the seasonal challenges faced by those with EB. In addition to the newsletter which can be delivered right to your inbox, we continue to update and maintain the latest information on our single-source web site that contains even more helpful information for EB families. When you check it out, be sure to sign up for the EB Advocate e-newsletter.

EB Advocate Facebook Group

One of the things that EB families seek most is support from others faced with the same challenges. Simple sharing of information, combined with connecting with each other, helps ease the burdens that come with EB. This Facebook group was created with that in mind. Check it out and join!

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!