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!

Henny Penny/United Way 5K Run

On Saturday I ran in the Henny Penny/United Way 5K. This is the fourth year for the event. The turn-out was great! About 60 runners/walkers came to enjoy the beautiful morning and raise money for the Greater Dayton United Way. Last year's event raised over $3000 for the Eaton Community swimming pool memberships, as well as the MR/DD program to help build a playground for the handicapped. The event also consisted of a 15, 30, 50, or 75 mile bike ride that toured all the covered bridges in Preble County.

This year, the money raised is going to help families buy school supplies. Preble county has one of the highest unemployment rates in the state, therefore school supplies for area children will be the focus this year. Local programs like the Domestic Violence Shelter, Feeding the Elderly, The Emergency Assistance, and Young Leaders programs have benefited from continuous support of the entire network of services.

I am pictured with Preble County United Way representative, Janet Crelin after I received my award. I finished runner-up, overall female with a time of about 25 minutes. It was another great day in Ohio!

The Eleventh Annual Mats Wilander Celebrity Tennis & Golf Classic

(click above to register for tennis/golf classic)

Monday, October 19th 2009

Westchester Country Club

Rye, New York

(to benefit epidermolysis bullosa)

The Eleventh Annual Mats Willander Celebrity Tennis/Golf Classic will prove to be a fun and memorable occasion to those in attendance as we welcome Will Ferrell.

Will Ferrell will spend the day alongside tennis champions Mats Wilander, John McEnroe, a host of internationally-known competitors and YOU.

This year's event will provide the perfect opportunity for you to enjoy a good game and have a few laughs with the pros while supporting a great cause.

Schedule of Events:

8:30 am - 10:00 am Registration and Breakfast After check in, a light breakfast is served before beginning a full day of fun.

9:00 am - 10:30 am Tennis Clinic with Mats Wilander and John McEnroe Enjoy tips from tennis celebrities that may improve your backhand dramatically.

10:00 am - 12:30 pm Full Brunch An elaborate brunch is served in one of Westchester’s wonderfully decorated dining rooms.

10:30 am - 11:00 am Tennis Exhibition between Mats Wilander and John McEnroe Mats and John will play an exhibition match befitting their world famous status with commentary by special guest, Will Ferrell.

11:30 am - 5:00 pm Golf Shotgun Start and Golf Tournament Will Ferrell kicks off a shotgun start followed by a celebrity filled golf tournament and guests discover how well they stack up against the pros.

12:30 pm - 4:40 pm Tennis Fast-serve and shot-making competition Tennis Guests will challenge their skills as they enter into the Fast-serve and shot-making competition.

5:30 pm - 7:00 pm Cocktail Reception and Silent Auction An elegant cocktail reception and silent auction provides an opportunity to support the cause and find the perfect gift for yourself or someone else.

7:00 pm - 9:00 pm Awards Ceremony, Live Auction,Dinner & Dancing with the Stingers The evening ends with a three-course dinner and dancing to live music by New York City’s hottest dance band, The Stingers.

Sunny Florida!

Maxx and I are "boogie boarding"

Maxx & Anna on the beach!

We took a trip to see my Grannie and Gramps in Daytona Beach this past week. We have been going down there for about 10 years now. Each year is better that the previous, except this time was bitter-sweet. Jason was not able to go because of his work schedule, so we missed him tremendously. However, in the words of my mother and grandmother, "absence makes the heart grow fonder"..............and it did! We had a blast, but missed daddy!

We spent some quality time with my mom and grandparents while we were there, which is always great! My Grannie was diagnosed with colon cancer almost 9 years ago..........she is still with us today, but moving around slowly. There are no more options for treatment. She has been on every chemotherapy you can put in your body. Last year her doctor suggested that she travel to Baltimore to visit the Cancer Research Institute. My Grannie is so positive and looks at life in such great ways that she did in fact go to Maryland. While there on her once-a-month visits, she took a non-FDA regulated cancer drug. She told me that if she could help save another person's life by being a "guinea pig", than she would do it! She is an amazing woman!

Two weeks ago is the last time she traveled to Baltimore. She got up one morning and announced to everyone that she was done with the chemo, she wants to "live" her life. She is in a lot of pain right now, but still looks at life in positive ways. I am happy that my children got to spend a week with their great-grandparents. Life is good!

Awareness Reaches Germany!

"You are accomplishing your mission on getting the word out on EB!"

-Pennie Cannon, Executive Asst. DebRA of America


Today I received an email from DebRA of America. They had been contacted by an EB volunteer in Germany who had read the "Mrs. Ohio" article on the United States DebRA website. The volunteer helps EB families in Germany and wanted to know more about the "newborn care packages" we send to newly diagnosed EB babies. My family is now moving toward helping "internationally". We are reaching out to other countries who have advocates working for EB to inform them of the supplies/dressings we put in the packages. My family and DebRA of America will work with advocates in other countries to provide similar "care packages" for children born with EB. My family has worked with DebRA of America for six years.........this is exactly what all of our hard work has lead us to............helping others everywhere!

Raising Awareness for EB & Register Herald Article

"My son and other EB sufferers.......this is my good reason!"

-in response to "Why would a grown women compete in a beauty pageant?"

click the picture below to read the story from the Register Herald:

Bandage Changes can be Very Difficult!

This weekend I was contacted by DebRA of America who referred me to an EB familly having trouble with bandage changes for their child. The family's concern was that she was not holding still and "cooperating" during the bandaging process. The main reasons for most EB children resisiting these dressing changes is because of the pain involved. Many times the bandaging, although a special kind, can adhere to the skin. It can be very painful trying to get it off. Many times parents will soak the bandages off in the bathtub. I offered the family some advice, but also let them know that each EB child is different in their pain level and "willingness" to sit still during these dressing changes that can sometimes take up to 2 hours depending on the severity of EB. When Maxx was younger, we would try to get him involved in the process of bandaging. He would hold the gauze or the Aquaphor, and I think this made him feel like he was part of the process. The trickiest thing is lancing a blister when it has become full and swollen. I hated when we would have to hold him down just to get this done, but if we didn't it would double in size in the matter of an hour. It was nice to be able to communicate with this family about the trials and tribulations of EB. It helps families feel as though they are not alone. I am also sending out a new baby box of supplies to them since they have not received one yet.

To understand what it is like for a child with severe epidermolysis bullosa to get a dressing change, please click the link below: These pictures were captured by Shannon Montez, a photographer in California.

www.shannonmontez.com/bandage/

Order the Kindle and Support DebRA of America!

Great Gift for Dad and New Grads!
Visit our website at www.debra.org and order your new Amazon Kindle 2 and a portion of your purchase will go to DebRA.

THIS WILL MAKE A GREAT GIFT FOR YOUR DAD OR YOUR GRAD. By purchasing your Amazon Kindle 2 through this link or through the DebRA website you give a portion of the purchase price directly to DebRA or America.Debra of America is the only national non-profit organization dedicated to research and direct services for Epidermolysis Bullosa (EB). EB is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Those born with EB are often referred to as butterfly children. Today there is no cure and the only treatment is daily wound care and bandaging. Click here to place your order.

Maxx Madness Talentpalooza for EB

This past April, the Preble Shawnee seniors hosted the 3rd Annual "Maxx Madness Talentpalooza for EB". High school students have the opportunity to show off their talent on stage in the auditorium while also raising money for a fantastic cause, epidermolysis bullosa. The inspiration for the talent show came about three years ago when the group of seniors that I had taught as sixth graders decided to do their community service project on EB. I was honored and delighted that they would have the chance to learn about EB and spread the message of awareness, while raising research dollars for DebRA of America. They named the talent show after our son Maxx, who has dominant dystrophic epidermolysis bullosa. Each year seniors vote on what their community service project will be, and they have continued to support EB research and awareness. To date, Preble Shawnee High School seniors have contributed $12,000 to DebRA of America. I am proud to say that I have taught these students in their younger years, and amazed at the talent, generosity, and compassion they have for my son and other EB sufferers! I want to thank Matt Hopkins, the senior government teacher for all his hard work and for inspiring these students to continue serving their community!

(Speaking about EB before the show & Receiving our "Maxx Madness T-shirts)

(Maxx Madness banner made by the art classes)

(flashback to the 70's)






(16-year old guitarist, amazing talent!)

Sending Newborn Boxes

Today I sent out two more care packages to newly diagnosed EB babies. My family and I are contacted by the DebRA of America nurse with contact info, etc. Many people do not realize what it takes to care for an EB baby/child. Living with EB can dictate what you do from day to day. Band-Aids are not to be used on the skin because of the adhesive. Pulling a band-aid off can mean pulling the skin completely off. Special bandages are used, similar to those used for burn victims. Woundcare companies like Hollister Woundcare and National Rehab send boxes and boxes of special bandaging to put in the care packages. Many times, Maxx will help me pack the boxes. He likes to put the teddy bear in, as well as the blanket. I often get phone calls and thank you cards for sending the boxes to the families.........I can't begin to explain to anyone the amount of satisfaction is brings my family to have helped another EB family!

Jillian's Formal Wear & Mrs. Ohio America

I went back to Zanesville yesterday to get fitted for my gown for the International pageant, as well as to thank Jillian's Formal Wear for their generous gifts and sponsorship. While there, I met a beautiful little girl who is going to be the maid of honor in her mother's wedding. She was a breath of fresh air with her vibrant red hair and upbeat attitude. I let her wear my crown and sash around the store. She was a pure delight to be around. Before I left, she turned to me and said, "I hope you win. You are so pretty!" Cambriel......you are a shining star! (pictures used are with permission of parent)

I also had the chance to attend the Mrs. Ohio America pageant held in Columbus. I attended the pageant with my state director, the beautiful Vicki LeVeck and the one and only, Ryan Harris!Nine beautiful ladies were competing for the title! Mrs. Dayton, Stephanie Gooden is the new Mrs. Ohio America 2009. I met Stephanie while competing in the Mrs. Ohio International system this past May. Keep working hard Stephanie and remember the goals you have set. Stick to the path of accomplishing what you have set out to do! I also met Tonya Stump, Mrs Ohio America 2008 and the new Mrs. Northeast International. We will be in Chicago together competing this July. She is a lovely women! I am excited to get to know her better!

Hueston Woods State Park

Jason and I enjoyed some time together at Hueston Woods state park this past Friday. We took a picnic dinner (pb&j....our favorite!) and watched a beautiful sunset. We took a hike and also did some fishing. Jason caught a crappie and I was super excited, but no luck after that! It was so wonderful to re-connect for an evening, leaving behind all the hustle-bustle of the day!

Go Red for Women

Today I met with Cris Peterson who is the Go Red for Women Director for the Dayton, Ohio American Heart Association. We discussed ways I could help and volunteer with the chapter. I explained to her that the Mrs. International Pageant supported the Go Red for Women campaign, and she agreed that the most beneficial way I could get involved is to actually speak about the importance of a healthy heart to groups of women throughout the Dayton and Cincinnati area. They also have an "Urban Nights" event that is in downtown Dayton that offers free health screenings and heart check-ups on site. Their annual Go Red for Women luncheon/fashion show in March. Last year, they raised $150,000! How wonderful!

I also had the chance to speak with her about the importance of my platform, epidermolysis bullosa (EB). She had never heard of it before and I was pleased to be able to explain the disease to her. She took DebRA of America literature, as well as my platform page to share with the other members of the chapter. I feel great knowing that I got my message out to more people today.......one person every day for a year means that 365 more people know about EB!

Jump Rope for Your Heart

I was at Camden Elementary in Camden, Ohio today handing out prizes for the Jump Rope for Your Heart campaign. I was asked to be the coordinator for JRFYH. It was the first time in over 15 years since the school had participated. I remember doing this when I was in elementary school, and it was so much fun! The elementary school donated $500 to the AHA!! Way to go kids! I was a former teacher here, so it was nice to see all the children and the teachers I have previously worked with. I am proud of all the students' efforts! (pictures of students have been authorized for use by parents/guardians)

Go-Kart Racing is a Family Thing!

My husband's family owns a go-kart track in Camden, Ohio. The track was built in the late 50's by his father and grandfather because of their interest in racing and fast cars! It is now one of the most recognized karting tracks in the U.S. today. G&J Kartway is part of the Ohio Valley Karting Association and my husband and his brother have been racing there since they were 5 years old! Maxx started practicing a bit last year and now has officially began racing this season. He is not the fastest one out there, but he is having fun and learning new things each weekend. My husband and brother-in-law are also racing, as well as my nephew.

Maxx's skin seems to tolerate racing and the gear pretty well. We have some issues with his ankles and elbows right now, but other than that, it has been smooth sailing so far! It would be easy to put him in a "bubble", but we feel that it is necessary for him to experience all aspects of life and only then can he make the decision if he can tolerate the blistering that comes along with that particular activity. Go Maxx!

Maxx and his trophy!

Jason is working on Maxx's kart. I think the clutch went out!

Anna.............the future of kart racing!