Our Hero, Maxx!
Maxx was born with dominant dystrophic epidermolysis bullosa; a rare, genetic disease that leaves blistering and open wounds on the body.
Monday, November 2, 2009
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Maxx was born with dominant dystrophic epidermolysis bullosa; a rare, genetic disease that leaves blistering and open wounds on the body.
support EB research
The journey ahead will be one that my family and I will walk together!
Maxx was born with dominant dystrophic epidermolysis bullosa; a rare, genetic disease that leaves blistering and open wounds on the body.
Platform
Epidermolysis Bullosa;
Hard to Say, Easy to Learn!
Speaking on behalf of DebRA of America, Inc.
Click here to learn more!
Hard to Say, Easy to Learn!
Speaking on behalf of DebRA of America, Inc.
Click here to learn more!
Ohio International Pageants
Blog Archive
About Me
- Lindsey Gregg
- I am a dedicated mother, married to a loving husband, and an advocate for the rare genetic disease our son was born with; epidermolysis bullosa, or EB. I am Mrs. Ohio Int. '09 and will use my voice to educate people about EB and it's severity. contact me: doughela@yahoo.com
Thank you Hollister Woundcare for supporting me on my journey,and allowing me to spread my message!
Followers
Dystrophic Epidermolysis Bullosa Research Assoication
DebRA of America, Inc
support EB research
My Family's Role for DebRA of America
In 2007, My family and I were appointed to be the New Family Advocates in charge of the new baby care package program. We house over 12 boxes of bandages, ointments, and comfort items that are donated to the program. Each time a new baby is born in the United States with EB, the DebRA nurse contacts us, and we send a care package to the family letting them know that there is a wealth of support and connections for their family. We personalize each box with a hand-made blanket that is soft enough to be close to the baby’s skin. As of 2009, our family and friends have helped raise over $25,000 for Epidermolysis Bullosa. Our most recent fundraiser included our son, Maxx, who has learned about community service as well. Just recently, a local coffee shop featured our son’s artwork. Maxx drew twenty dinosaurs over the course of three months. He knew that the money raised selling his artwork would go to EB children like him. It feels great getting him involved at such an early age!
learn more about EB
Events & Appearances
May 22- Speaker at Preble Shawnee Senior Breakfast
June 2- Jump Rope for your Heart Prizes- Camden Elem.
June 7- Mrs. Ohio America, Columbus, OH
July 14-19- Mrs. International, Chicago IL
August 8- City of Independence Home Days Parade, Cleveland, OH
August 9-Clemens Cycle for Cancer, Dayton, OH
August 16- Miss Black Ohio USA, Columbus, OH
August 23rd-Ceremonial 1st Pictch @ Datyon Dragons
September- Walk for your Heart- AHA, Dayton, Ohio
September- "Urban Nights" free health screenings AHA, Dayton, Ohio
September 19- Pork Festival Parade, Eaton, OH
October- American Diabetes Assoc. Event, Columbus, OH
October 11- Walk Now for Austism, Columbus, OH
October 17- "Just Go Nuts" 5K Run/Walk for Literacy, Camden, OH
October 19- Annual DebRA of America Fundrasier: The Eleventh Annual Mats Wilander Celebrity Tennis & Golf Classic, Westchester Country Club, New York
October 25-31- International EB Awareness Week
February 20, 2010- BeFriend EB presents "The Butterfly Ball" Rochester, Michigan
March 2010- Go Red for Women Lunch/Fashion Show, Dayton, Ohio
June 2- Jump Rope for your Heart Prizes- Camden Elem.
June 7- Mrs. Ohio America, Columbus, OH
July 14-19- Mrs. International, Chicago IL
August 8- City of Independence Home Days Parade, Cleveland, OH
August 9-Clemens Cycle for Cancer, Dayton, OH
August 16- Miss Black Ohio USA, Columbus, OH
August 23rd-Ceremonial 1st Pictch @ Datyon Dragons
September- Walk for your Heart- AHA, Dayton, Ohio
September- "Urban Nights" free health screenings AHA, Dayton, Ohio
September 19- Pork Festival Parade, Eaton, OH
October- American Diabetes Assoc. Event, Columbus, OH
October 11- Walk Now for Austism, Columbus, OH
October 17- "Just Go Nuts" 5K Run/Walk for Literacy, Camden, OH
October 19- Annual DebRA of America Fundrasier: The Eleventh Annual Mats Wilander Celebrity Tennis & Golf Classic, Westchester Country Club, New York
October 25-31- International EB Awareness Week
December 11th- Go Red for Women Holiday Event
February 2010- Heart Healthy MonthFebruary 20, 2010- BeFriend EB presents "The Butterfly Ball" Rochester, Michigan
March 20th- PA International Pageants
March 27th, 2010- Butterfly Benefit Fashion Show/Luncheon & Silent Auction- Louisville, KYMarch 2010- Go Red for Women Lunch/Fashion Show, Dayton, Ohio
April 10th- Mrs. Ohio International Pageant- Springfield, Ohio
May 22nd- Winos & Dinos, A wine tasting & charity art auciton featuring drawings by Maxx Gregg