What I meant by sorry you had to find PPMD was because anyone who has a DMD child is someone I feel bad for. PPMD is wonderful, without it I would be lost. But finding it is out of necessity, not desire. I hope that expains it well enough.
Sorry you had to find PPMD but welcome anyway. We also went to Washington last Feb. We need you to join up with the Cal group since there is much information we could share and that is the fastest way. So, please consider it - there are quite a few Cal people who might be better off sharing local information with you!
I believe Scott is the one who went to Washington DC in February. If he is the one, you can be proud of your son. He did a great job in DC. Scott and I went to a couple of offices together. One of the offices we had a meeting with, my sister's district, just committed to signing on! It was the office they told Scott and I they had already met with someone from California. We were able to meet with them and keep the appointment we had scheduled. I hope this is the Scott that was in DC!
Please tell him I wish all his family well and I hope things are moving along.
I do want to say it is so wonderful when grandparents are involved. The support you offer is so important!
One more suggestion if you don't mind. Join the California families. It is under Group. I am hoping we can build this section up and offer families in California valuable resources.
The Advocacy section under Discussion is another important section. We are still trying to get the MD Care Act re-authorized. That was part of why we were in DC this past February. This is where families can help raise the much needed monies to help our families. It is the one place we can raise the most money and really help to change the way dmd is treated.