PPMD Community

PPMD's Comments

At 6:15pm on August 1, 2021, Kim Watters said…: hey am kim watters i just want to ask is there any one form wa state is doing run for our son in seattle in june i have that would like to do it any information would great thank you. kim or kimmy

At 6:15am on October 24, 2015, Anca Felicia Lutas said…: Thank you! he always smiles!

At 9:42pm on October 23, 2015, Anca Felicia Lutas said…: Thank you very much!
He always smiles!

At 7:34am on February 18, 2015, Subodh Joshi said…: great effort. is there any thought of initiating this work in india?

i am a 50 years old patient. still working in disability area. much scope for such work here.

At 5:49am on October 16, 2014, Hassan K. Shehu Shehu said…: I lost two of my three children with duchenne dmd,the last one has started to show signs of gowers. He only takes prediniselone for almost six months now ,please help me with advice .

At 5:45pm on March 1, 2012, LYNN JONES said…: I'm sorry if i upset anyone with my message of any families with young boys, we experienced the most wonderful, fulfilling,caring, happy, joyous i could go on and on..of our lives with our darling boy he brought us so much pleasure we miss him so much but we will go on and carry on raising awareness and raising funds for the hospice (derian house) they were a fantastic support and still are enjoy everyday and live for every moment xxx

At 5:39pm on March 1, 2012, LYNN JONES said…: Thank you for replying to my message, its been the hardest few months of our lives, matthew was our world and we miss him like i cant explain, he was loved so much by all his family. he was such a well and happy boy, his passing came as such a shock it was so sudden and unexpected, we had had such a perfect day with him i still cant believe it happened and how we are coping without him with us. you read literature regarding the boys condition and me and my husband believed we were so lucky with matthew as he had always been in such good health, we were so lucky. when the boys reach a certain age things change for them and we didnt see it coming (something i will never forgive myself for) the care matthew received once in adult services wasnt the same or as through. thank you once again for replying its good to type away my thoughts xxx love lynn

At 5:32pm on February 22, 2012, cercel alexandra silvia said…: thank you verry much!

At 11:41am on October 27, 2011, Damien Howey said…: thank u and i was wondering how we can get stuff going in North Dakota

At 10:35pm on October 7, 2011, Mrs. Joseph Wood said…: Thank you so much! We are hoping to connect with others that are successfully finding ways to improve the quality of life for their sons.. and working to find a cure! I would be blessed by the information you mentioned. I'll take a look at that link. Thank you again for the welcome!

At 12:23am on April 23, 2011, Lorrie Wolf said…: Thank you! This site and your work is such a blessing to our family!

Lorrie

At 3:42pm on April 14, 2011, Jeffrey Kopp said…: Please send me a friend request! I'd send you one but it says I'm maxed out? Weird...

At 10:40am on February 18, 2011, Lorrie Wolf said…: Thank you so much! It is wonderful that we parents have a resource like this!

At 3:49pm on February 7, 2011, sana brohi said…: i m aslo glad to be here thanks u all

At 2:19pm on January 25, 2010, Wyatt's Mommy, Melissa said…: Ryan, Thank you. I love showing off pictures of Wyatt.

Melissa

At 6:59pm on June 30, 2009, Tracey Hartz said…: Hi Ryan-you messaged me to let you know if I would like a packet of information-I would. ThanksQ!

At 7:25pm on May 4, 2009, Christine Stalling said…: Hi Ryan. I live in Missoula, MT and I have been struggling to find good doctors to help. The MDA is based in Billings which is about 6 hours from Missoula. They do conduct quarterly clinics in Missoula. My son and I attended 2 of these clinics--they were useful for the Dx but now I am searching for a better option. The last doctor we saw knew far less about current research and care than I do (and I am no expert). I believe I will need to take my son elsewhere to find better help; the Shriners Hospital in Spokane is 4 hours from Missoula and then there is Seattle Childrens Hospital. Any advice you could give would be greatly appreciated.