Thank you so much for providing the forum for me to connect with parents, researchers, and practitioners in our community. I always look forward to July for rejuvenation and motivation. Please contact me when you are in San Diego.
Thank you for a wonderful conference!! As a first-timer I had a GREAT experience! It was so nice to meet you and all your wonderful staff! I am already looking forward to next year when my husband will be able to come along. If you ever decide to have conference in New Orleans, let me know and I can help from this end!! God Bless you!
My name is Jennifer Collier and a friend of the family recommended that I connect with you. My husband's aunt has a dear friend by the name of Jeffery Cohen who suggested that we connect with you and the PPMD community. I joined the PPMD community at the end of June, and have learned a lot. The people who are part of the community are awesome!!! I would love to speak with you when you have a spare minute. I know you are extremely busy with the conference this weekend, so whenever you have an opportunity would be wonderful! Thanks so much!!
-Jennifer Collier =)
I know you have a load to do and a conference to put on very soon but some parents, myself included, were wondering if there were specific dates yet announced for the upcoming Losartin trials. Parents were mentioning hearing/reading that the trials are to be announced sometime this year and since no one has heard anything...
I have joined your wonderful website and would like to ask you a question about Glyconutrients. Have you heard of this before. Apparently I have just been given a book to read regarding this in Down Syndrome and they mention Glyconutrients in it for DMD. I have not read much, have asked Deb about it and she sent me a website to look at which I have done briefly but thought I would ask you for your comment in the meantime.
Thank you for a great way of meeting others and getting lots of help in different ways.
Hope to hear from you sometime.
I am full of weird ideas and this one will probably take the cake! But, has anyone ever thought to coordinate an exchange with ActionDuchenne in the UK? The type I am thinking of is double your money where they send their donations to you, after exchange fees, their pound is worth almost twice the dollar right now. It could go twice as far as in the UK and aren't we in this together anyway?
I wouldn't blame them for being suspicious but wouldn't it be nice...