Thinking of your family often. Remember you won the airline ticket at the fundraiser. When you need to use it let me know. I will be running in the half marathon in Houston in Jan. We hope 35 will be participating for PPMD. I am having a yard sale for saveourboy in December. Wanted to get something going with the Heat but with all there delays of season etc. the NBA doesn't sound too promising this year. Will try to get in touch with UM basketball and see if we can arrange some type of fundraiser at a game there. How is Alex? He must be in his second year of high school. Grant started Kinder. Harriet
Hi Mandy, it is so good to hear from you, above all, to hear that Alex is doing well.
Well, Andre is going to Floranada Elementary now. He likes school, and healthwise he is doing well, but his ambulatory stage has almost come to an end. He has been using his powerchair since September, first only at school, now he is using it everywhere, except at home where he still walks a little bit. The reality of progression is tough to digest, but overall we are doing fine. He will be going to the MDA camp this year for the second time. He loved it last year;) Keep in touch. Wish you all the best. Isabel
Mandy, I forgot to add this. I would like to involve more families in the area who have children with duchenne.. If you know more people or someone reads this who lives in the South Florida area, please contact me. I am new at fundraising but will do everything in my power to raise money for research for a better treatments or cure for all our boys. Once again, my number is 305-554-5744 /786-382-5685. I live in the West Kendall area of Dade County. Harriet Meermann
Mandy, We talked last year by phone. I was in Washington DC with parent projectmd Feb. 12-15. I am now having my second annual fundraiser for duchenne on April 29. Last year my dear friends Margie and Joel Stutz opened their home in Coral Gables for a fundraiser and it was a success. This year we will be having a dance featuring a popular band at the Miami Sunset Elks Club. I would love to have your family participate. Please call me and I will give you more information about the fundraiser and what I learned in Washington DC. It was my second year going . I am a grandmother of a four year old with duchenne. My numbers are 305 -554-5744 and 786-382-5685. Thank you.
We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...
Thanks for your kind attention to this,
Here is my email and phone number: email@example.com or (513) 765-9416
Mandy, I am a grandmother of a 3 year old with dmd. I am having a fundraiser in Miami on Feb. 6. I would love to have you and your family attend. My grandson was diagnosed in May 2009. The fundraiser is to raise money for research and to build awareness. Please visit saveourboy.org to learn more about our family.Please call me at 305-554-5744. I have been trying to find families in Dade and Broward to attend the fundraiser. Would love to hear from you. I will be going to Washington DC. on Feb. 21-23 as part of ppmd . I am a teacher with Dade County Public Schools. . Would love to hear from you.