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Ryan Fischer
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- United States
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Ryan Fischer's Discussions
Suspension liquid version of deflazacort instead of pill form
Started this discussion. Last reply by David Nov 3, 2014. 1 Reply 0 Favorites
Study by CHOP on Clinical Trials - We need YOU to participate
Started this discussion. Last reply by Colin McKenzie Oct 26, 2008. 3 Replies 0 Favorites
Congress Passes MD-CARE Act Reauthorization
Started this discussion. Last reply by Jerry Dallapè Oct 1, 2008. 4 Replies 0 Favorites
Ryan Fischer,Sr. Vice President, Community Engagement
Profile Information
- About me:
- Vice President of Advocacy & Community Outreach for PPMD. Please feel free to contact me via ryan@parentprojectmd.org. I am happy to answer any questions you have about our organization and connect you with others in the community. Please feel free to contact me for access to any of our materials as well. We have a great list of resources for you, your doctors, and your son's school. Thank you for visiting the PPMD community site.
- City:
- New York
Ryan Fischer's Photos
Ryan Fischer's Blog
70 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget
Posted on April 16, 2018 at 11:30am 0 Comments 0 Favorites
We are pleased to report our final numbers for the FY19 letters.
In total, 19 Senators signed onto the Senate FY19 letter, joining 51 members of the House. That makes a solid 70 members of Congress (House and Senate combined) sending a strong message of support behind Duchenne research, public health, drug development, and patient support initiatives. They provide strategic direction for the federal agencies that touch Duchenne. Given the…
ContinueEnd Duchenne Tour Recap: Grand Rapids, MI
Posted on March 28, 2018 at 4:30pm 0 Comments 0 Favorites
PPMD was excited to head to the Midwest for the second stop on the 2018 End Duchenne Tour. The event took place at Western Michigan University in Grand Rapids, Michigan, in partnership with Team Joseph, Little Hercules Foundations, and Noah’s Feat.…
ContinueADD YOUR VOICE: Participate in PPMD’s Gene Therapy Survey
Posted on March 14, 2018 at 1:30pm 0 Comments 0 Favorites
Patient-Focused Drug Development in action
Companies developing gene therapies, the FDA, and other stakeholders are interested in the treatment priorities of the Duchenne community. Because of this, PPMD has collaborated with RTI International, with financial support from Solid Biosciences and…
End Duchenne Tour Recap: Morristown, NJ
Posted on February 15, 2018 at 2:30pm 0 Comments 0 Favorites
PPMD kicked off the 2018 End Duchenne Tour with a stop in our very own backyard - Goryeb Children's Hospital in Morristown, New Jersey! PPMD was extremely grateful to partner with Michael's Cause, Pietro's Fight, Powers Promise, and Ryan's Quest on…
ContinuePPMD's 2018 Advocacy Conference | Schedule of Events
Posted on January 23, 2018 at 4:50pm 0 Comments 0 Favorites
The PPMD Advocacy Conference registration is live! Join us March 4-6 in Washington DC to advocate for Duchenne directly with Members of Congress.
Our…
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Hi Ryan
Thanks for your help for passing on my queries to right person
Regards
Kuldeep
Hi Ryan, I met you briefly at the connect conference this weekend and Patrick Rownd said to get in touch with you and you could walk us through the advocacy piece and how to get started. We are in St. Louis, MO. 63109 and I know senator Blunt has already signed on, but Claire Mccaskill has not. Not sure where we are in Missouri as far the house. Any help would be very appreciated as we are just getting started.
hey Ryan !! I am Nabeel Ahmed patient of MD want to know about physical exercise.
hey ryan how are you its kimmy just letting you know all ready email senator cantwell from washingtion state , will be calling congressmen heck klimer and smith. about med care out is there any one from tacoma comming or gig harbor kimmy
Hey Ryan, Do you guys happen to have any guide lines or a packet for Physical Therapy? I have been running into a lot of issues with them doing activities that are not helpful to Danny, but "they are the professonal" so I thought if I had something I could just give them that would help! Let me know, also please let me know if and what you need me to do for district 5 (53214) WI.
Thanks, Melissa Meller (Danny Ell's Mama) :)
no i havent gotten a packet just found out about u guys we just found out in May that our son has DMD he is 3
My son Austin(DMD) goes to a private school. Every year we have a 5K Run to raise money for the school and a portion of the money they send to Parent Project. Could you send me some information that maybe can be passed out at the race about what duchenne is and what Parent Project is all about?
Kim
It was great meeting you at the Run for Our Sons Dinner at Naples/Disneyland. Thank you for welcoming us.
Please could you send me the Manifesting Carrier DVD and materials that you have available. I will gladly give you my new address once you add me as a friend to keep it personal if that is okay. We have moved since I last received materials which was probably 2008 sometime. Also, let me know how PPMD can have more presence on the West Coast.
Thank you.
Kari
Looking forward to catching up with you at the conference this week. I started a discussion last week to see if anyone who is attending might see it and contact me or Diana about the study. It didn't attract any attention, but I don't know if there's a more direct way to invite conference participants. I believe you all may be including info about the study in the welcome packets for participants, and Diana should have sent you a podium announcement (or will give it to you in ATL). If you have any other suggestions, please let me know. Thanks a lot.
Bill
Hope you are well. I have a question about COQ10. Its a suppliment. Are you aware of this suppliment and do you know of any potential benifits to our boys? I have just become aware of COQ10 and would like to find out more. Maybe if you know of another family using this product you could pass along the info to them.
Hope to see you at the conferance in 2010.
Steve Beaulieu
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