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Parent Project Muscular Dystrophy (PPMD)

Profile Information

About me:
Parent Project Muscular Dystrophy’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.

email: Community@ParentProjectMD.org
phone: 800-714-5437
City:
Hackensack, NJ

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PPMD's Blog

Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy

Posted on November 15, 2017 at 2:30pm 1 Comment

PPMD is excited to learn that Capricor's investigational cell therapy, CAP-1002, is showing significant improvements in people with Duchenne. We look forward to learning more details about this therapy in a community webinar on Wednesday, November 29 at 1pm eastern. Details coming soon!

Read the release from…

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David favorited PPMD's blog post Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy
Friday

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PPMD posted a blog post

Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy

PPMD is excited to learn that Capricor's investigational cell therapy, CAP-1002, is showing significant improvements in people with Duchenne. We look forward to learning more details about this therapy in a community webinar on Wednesday, November 29 at 1pm eastern. Details coming soon!Read the release from Capricor: …See More
Nov 15

Staff
PPMD posted a blog post

PPMD Submits Community Sign-On Letter to FDA Supporting Approval of Ataluren

PPMD has been continuing to engage with both PTC and the FDA on behalf of the patient community regarding the regulatory review of ataluren. Earlier this month, PPMD reached out to FDA…See More
Nov 13

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PPMD posted blog posts
Nov 6

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PPMD updated an event

For Clinicians: PPMD Duchenne Clinician Care Conference at Sanibel, FL

January 24, 2018 to January 26, 2018
This year, PPMD will be hosting our first Duchenne Clinician Conference, January 24-26, 2018 at the Marriott Harbor in Sanibel, FL. Registration is now open.This conference will provide up to date clinical education, resources, materials and networking, supporting your ability to provide the very best care to your patients and families living with Duchenne.Our robust agenda will cover comprehensive care and…See More
Nov 3

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PPMD posted a blog post

Sarepta Therapeutics & Nationwide Children’s Hospital Announce FDA Clearance of the IND Application for the GALGT2 Gene Therapy Program

Once again, PPMD is excited to see industry, patient groups, and research partnering, as today Nationwide Children's Hospital and Sarepta Therapeutics announced the achievement of an important milestone in their collaboration on GALGT2…See More
Nov 3

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PPMD posted a blog post

Letter from PTC Therapeutics to the Community Following FDA Decision

PTC has shared a letter with the Duchenne community in regards to the recent FDA decision. PTC will be holding a community call on Friday, October 27 at 12:00 PM EST to discuss next steps with the community. Please e-mail your…See More
Oct 26

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PPMD posted an event
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[Webinar] MoveDMD Trial Open-Label Extension Results at Online Webinar - Eastern Time Zone

October 25, 2017 from 1pm to 2pm
Please join Parent Project Muscular Dystrophy and FibroGen as we host a webinar Wednesday, October 25 at 1:00 PM EDT to hear a community update on FibroGen’s development of Pamrevlumab and currently enrolling FGCL-3019-079 non-ambulatory study in Duchenne muscular dystrophy. Host:Kathi Kinnett, MSN, CNP Senior Vice President, Clinical Care Parent Project…See More
Oct 18

Comment Wall (19 comments)

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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 11:37am on October 24, 2011, Anca Felicia Lutas said…

Thank you!

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!
 
 
 

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