Meeting Danielle

While at the Miss New England Coed Pageant, I had the opportunity to invite two very special guests to join me. Danielle Munoz is an eight year old girl with Cockayne Syndrome, and both she and her mom Lydia came to watch the preliminary evening gown competition with us. Danielle and her mom are here in Boston visiting Children's Hospital from Texas to participte in a medical/genetic study for children with Cockayne Syndrome. Danielle was chosen as she met all the criteria necessary to partipate in this study. As you will recall in an earlier post after the Mrs. International Pageant, I was able to meet a boy named Derick from Arizona who was in Boston participating in the same program. After Derick and his parents went back home, his mom told me about Danielle and asked if I would be able to meet up with her when she came to visit Boston. I said of course, but I did have a conflict with being part of the New England Coed Pageant. I then figured that I could do both and invite Danielle with her mom when I was free from my duties, and it all worked out perfectly. Along for the ride came my other friends Brooke Bibeault, Miss Massachusetts Teen USA, Tamara Sacharczyk, Miss Massachusetts Teen World, Jennifer Hard, Classic Ms. Massachusetts, and of course my daughter Sierra. Both the girls had so much fun watching the pageant, and after it was over, we traveled over to the Natick Mall to have lunch at the American Girl Store. During conversation we found out that the Danielle's Birthday had been the week before, so we asked our waitress if we could have a little celebration for her. Out came a bowl of ice cream for Danielle with a few candles and everyone sang Happy Birthday to her. When lunch was over, we walked through the store and took some pictures of the girls and all of us to remember this visit. I then drove Danielle and Lydia back to Boston and it was so hard to say good-bye as Danielle is such a love. It was so nice to see her interact with Sierra and even at one point they were holding hands in the car, which would have been a sweet picture had Sierra not been fresh and pulled her hand away and giggle. I also loved how when we all came back to my hotel room before lunch, Danielle absolutely loved playing with my dog Lola. She has so much joy and love to give, and it was truly a privilege to have met her. I want to thank Dre, Derick's mom for telling me about Danielle, and also Dr. Neilan from Children's Hospital who gave me the opportunity to meet both of these fabulous children. I hope that this is not the last time, and wish for a friendship that goes on for a long time. I am looking forward to keeping up on both Danielle and Derick through their parents, and hopefully see them soon again on another trip to Boston!

For more information on Cockayne Syndrome, please visit: http://cockaynesyndrome.net/main/.

Dr. Faustman's Diabetes Trial

Last week on Monday, Tuesday, and Thursday, I took part in a trial for finding a cure for Type 1 Diabetes at The Faustman Lab at Mass General Hospital. I was contacted by a friend of one of my best friends via e-mail looking for someone to be a control in this study for diabetes for a nine year old boy named Jerry. Jerry was traveling to Boston with his mother Cristina, and not having any friends or family from this area, they reached out to people in their state who had ties to the Boston area. I immediately responded that I could make myself available to take part and help out, as Diabetes is something that affects my family with my husband being diagnosed in 2008. It was so nice to meet Jerry and his mom and to learn his story of his diagnosis at the age of two. As with any family, when there is a diagnosis of any disease, we do our research to educate on how we can try to conquer it. Cristina did just that, and after years of being told there is no cure, she stumbled across Dr. Faustman's trial and decided to take part with Jerry in hopes of one day having a cure for Type 1 Diabetes. Jerry has been doing a great job learning to manage his Diabetes with in eating right, getting his daily insulin shots whenever required, and staying active as any little kid should. Jerry is now back in Washington and getting ready to start school on September 1. Although we live miles apart, his family and I will stay in touch and we will also continue to support this study as we hope that it will make a difference in Jerry's and Rob's lives and countless others who are Type 1 Diabetic.

Meeting Dr. Faustman was such an honor and bonus to participating in this trial. She was so fun to talk to and hear her story on doing this research. I loved to hear how people come from all over the world to participate in this trial, and she and her lab have actually gotten a geography lesson on several occassions with people coming from areas they have never heard of. I applaud her for having such enthusiasm and for taking the time to meet with us and especially to meet with Jerry and giving him and his family for a cure someday!

Phase I tested has been completed and it has been FDA approved that the vaccination being used is safe for individuals with Type 1 Diabetes. Phase II will begin once funding has been raised.

For more information on this trial and how you can donate to help Phase II get underway, please visit the website at: http://www.faustmanlab.org/. If you or anyone you know has Type 1 Diabetes, I encourage you to become a part of this trial. For more information on Type 1 Diabetes, please visit http://www.diabetes.org/.

7th Annual Bike Run & Raffle for Homes For Our Troops

On Sunday, August 1, I volunteered at a bike run that was organized to raise funds for an incredible cause called Homes For Our Troops. This organization raises funds to build homes for our military people coming home with serious disabilities and injuries. Homes For Our Troops is a non-profit organization that was founded in 2004, and has been serving our troops who have sustained their disabilities and injuries since September 11, 2001. For more information on this organization and how you can become involved, please visit their website at: http://www.homesforourtroops.org/.

The bike ride started at the Texas Roadhouse in Nashua, NH and ended at the Harley Davidson Dealership in Manchester, NH. I worked the registration table in Nashua, and met so many great people, many who were veterans themselves. It is estimated that about 800 bikers took part in this ride. It was so much fun to welcome the riders to Manchester where they were able to enjoy a great barbecue provided by Texas Roadhouse.

Another person that I met and felt so inspired by was Michael Guglielmo, who's son, Giovanni, underwent a bone marrow transplant that saved his life. Giovanni's father has not stopped there after his son's life was saved, but he has run bone marrow drives anywhere he can, and in fact, this was #503 for him. It is incredible when you hear of a miracle story and that the story of success is promoted to help save other lives. I of course signed up for the registry with filling out paperwork and taking 10 sipes with a cotton swab on each cheek that was put into an envelope. You never know when you may get that call to help save a life, and I know that I would want that hope if it was my child. To learn more about how you can be a bone marrow donor and also read about Giovanni's story, please visit http://www.helpgiovanniguglielmo.org/.

I want to thank Jennifer Mallios, Mrs. New Hampshire International for attending this event with me, as well as my husband and daughter. It was great to share such a great cause with you all.