Rahul Deshpande Male Auburn, NY United States: Favorite

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Duchenne Parents

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Outliers - Intermediate …

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Rahul Deshpande's Discussions

Moving to Auburn NY

Started May 27, 2015 0 Replies 0 Favorites

We are moving from India to Auburn NY. My son is 9 years with DMD due to exon 44 deletion. Any suggestion on clinic that we should take our son. Also any clinical trial we can enroll him. I have very…Continue

Youngevity and Vector Machine

Started this discussion. Last reply by Keith Van Houten Sep 8, 2014. 2 Replies 0 Favorites

I read that a combination of Youngevity supplements and Vector machine is giving good results for DMD children. Some are only trying Vector machine and some are trying only the Youngevity…Continue

Can Atalurin be of any benefit for Children with deletion

Started this discussion. Last reply by Trinh Nguyen Aug 6, 2014. 1 Reply 0 Favorites

Atalurin is now approved and is said to be the first cure for DMD. My son is having deletion of 44 exon. Was wondering if Atalurin can give some benefit in deletion cases also.Continue

Stem Cell Therapy

Started Jul 26, 2014 0 Replies 0 Favorites

In India many DMD patients are undergoing Stem Cell therapy and there is some improvement seen. At this moment Stem Cell therapy seems to be the only treatment that is showing some sort of…Continue

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Rahul Deshpande's Page

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Rahul Deshpande joined PPMD's group

Duchenne Parents

Mar 9

52 Comments 3 Favorites

Rahul Deshpande replied to Geraldine Coolidge's discussion Exon 44 Deletion

"That's correct this is a 96 week placebo trial. So for almost 2 years you give IV to your child not knowing if they are getting medicine or not. Bad on our children. After 96 weeks the open label will start and will be completed in 2019.…"

Oct 14, 2016

Rahul Deshpande commented on Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy

"Good job done by PPMD and other organizations. Sarepta has started recruiting for the Essence study which is for exon 45 and exon 53 skipping. It has a placebo period of 96 weeks. Which is absurd, our children will have to go through 96…"

Sep 21, 2016

Rahul Deshpande replied to Geraldine Coolidge's discussion Exon 44 Deletion

"My son has also exon 44 deletion. The study of Sarepta has still not started recruiting. See the link https://www.clinicaltrials.gov/ct2/show/NCT02500381?term=NCT02500381&rank=1 Bad news is that this study is going to have a 96 weeks placebo."

Jul 27, 2016

Rahul Deshpande commented on Pat Furlong's blog post Changing the Paradigm: The Eteplirsen Ad Comm

"Pat many thanks for your efforts. Your speech was moving and touched the heart. I saw the entire Ad Comm via live streaming. The DMD community made an excellent case for approval of Eteplirsen. The way children and their parents spoke was…"

Apr 26, 2016

Rahul Deshpande replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)

"Ataluren is approved in Europe and available in many European countries. Its proven beyond doubt that it benefits children with non sense mutation. What more does FDA want. Why do they want more data I don't understand. The sad story of…"

Apr 6, 2016

Rahul Deshpande is attending PPMD's event

Webinar: BMS Anti-Myostatin Adnectin Program at Online Webinar - Eastern Time Zone

March 30, 2016 from 1pm to 2pm

Wednesday, March 30th at 1pm easternPlease join PPMD and Bristol-Myers Squibb (BMS) as we host a webinar Wednesday, March 30th at 1pm ET to discuss the BMS Anti-Myostatin Adnectin Program, recent preliminary data from the first-in-human study of the BMS anti-myostatin, and a clinical trial that BMS is conducting to test this drug in boys with Duchenne muscular dystrophy.Speakers:Pat Furlong, Parent Project Muscular DystrophyLeslie Jacobsen, MD, Bristol-Myers SquibbLeslie Jacobsen is the Medical…See More

Mar 30, 2016

0 Comments 2 Favorites

Rahul Deshpande replied to Alpa Khushalani's discussion Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting

"Any news on the 45 skipping trial. Did they start screening children for the trial."

Mar 11, 2016

Rahul Deshpande replied to Shelly's discussion BMS ANTIMYOSTATIN TRIALS

"I am also trying to enroll my son for this trial. Would be good to hear from those who are participating."

Mar 1, 2016

Rahul Deshpande replied to Moein's discussion Metformin vs L-Arginine

"Yanbin, Thanks for your suggestion, I am giving my son Deflazacort for the last 6 months. Was considering giving L-Arginine and Metformin in addition as the results look promising."

Jan 27, 2016

Rahul Deshpande replied to Moein's discussion Metformin vs L-Arginine

"Moen how many days did you give this combination? Did you see any side effects. Did you give the dose as L-arginine (3 x 2.5 g/d) and metformin (2 x 250 mg/d). Which brand of L-arginine you used? My son is…"

Jan 25, 2016

Rahul Deshpande replied to Moein's discussion Metformin vs L-Arginine

"Yanbin did you see any improvement in your son. He was given L-arginine only or metformin also, the above study I guess was with L-arginine and metformin both. Interested in know if I can start giving to my son."

Jan 25, 2016

Rahul Deshpande replied to David's discussion Idebenone / Raxone from Masters - DON'T BOTHER

"That's absurd $264 per day. I guess when Santhera gets approval from FDA the price will come down also then it will be a drug which Neurologists can prescribe."

Jan 21, 2016

Rahul Deshpande replied to Trinh Nguyen's discussion Deflazacort

"I just scanned and uploaded the prescription for Deflazacort and they were able to send it. I just checked in alphabetic order under D there is Deflazacort."

Jan 19, 2016

Rahul Deshpande replied to Trinh Nguyen's discussion Deflazacort

"You can try Universal Drug store in Canada. I got a good service from them. http://www.universaldrugstore.com/"

Jan 18, 2016

Rahul Deshpande replied to Carly McGivern's discussion Duchenne Duplication

"Hi Andrea, Did your son see any improvement after taking tadalafil for 2 years. What is the dose that he is getting. Did you see any side effects?"

Nov 24, 2015

Profile Information

About my family:: I have two sons

Name(s) of child(ren)/individual(s) with Duchenne:: Rohan Deshpande

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: Auburn

State:: New York

Comment Wall (8 comments)

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At 11:12am on July 25, 2015, amit said…: Thx for reply sir actually I got my sons gene test report today and it is Neel but cpk level is 26000. Some reports stil not have performed

At 4:57pm on May 8, 2015, Rachel Sedacca-Replogle said…: Thank you for requesting my friendship. I am a stepmom and am trying to get a grasp on DMD and figure out what CAN be done. Look forward to learning along with everyone else.

At 7:00am on November 24, 2014, DEEPAK ARORA said…: HELLO MR RAHUL., I JUST WANT TO GET SOME MORE INFORMATION FROM YOU ABOUT THE SAME.. CAN WE TALK?? PLEASE SEND ME YOUR NUMBER..

At 4:05am on August 5, 2014, Anu Bakshi said…: thanks so much for ur encouragement... my cell is +91 9700010470..

At 3:26pm on July 25, 2014, himanshu Sharma said…: Hi Rahul,

i consulted with Doctor about the Idebenone(Catena), but she said, medicine has not shown very promising result .. I also heard Dr Prasad Arving Rasal , how about his medicines, any improvement. i am planning to consult him as well...

At 12:56pm on July 21, 2014, Satish said…: Hi Rahul, what is a best way to reach you. your phone number/email? Thanks.

At 4:56am on July 10, 2014, himanshu Sharma said…: Hi Rahul ,

My son is 5.5 year old and his DMD detected 1 month ago. There is not promising trial running at the moment. we are seeking for any other alternative treatment . Do you see any improvement in you Son on Hemeopathic medicine ?

At 12:40pm on July 7, 2014, himanshu Sharma said…: Hi Rahul,

How old is he, what is the symptoms right now. are he taking any other drugs, like homeopathy etc..