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Rupjani B
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Chicago DMD Families

Started Apr 6 0 Replies

Hi !This is Rupjani, my son Anuran was diagnosed with DMD in 2010 when we are in Wisconsin . We were there from 2010 to 2013 , after that we returned to India . Once again , we are back in U.S. ,…Continue

Santhera's Idebenone : Catena/ Raxone

Started this discussion. Last reply by Rupjani B Oct 15, 2014. 4 Replies

I've just read Santhera FAQ family friendly version.It is written in question no 4 that:Currently, Santhera anticipates that the label sought will be restricted to patients who are not using…Continue

Repeat Dosing of SMT C1100 for Treatment of DMD Meets Endpoints in Phase 1 Trial

Started Nov 7, 2012 0 Replies

Summit Corporation plc ('Summit' or 'the Company') REPEAT DOSING OF SMT C1100 FOR TREATMENT OF DUCHENNE MUSCULAR DYSTROPHY MEETS ENDPOINTS IN PHASE 1 CLINICAL TRIAL * New formulation delivers…Continue

Summit's SMT C 1100

Started this discussion. Last reply by Rupjani B Aug 14, 2012. 3 Replies

I got an e.mail from Summit with an updated Q&A of SMT C 1100.These are the main two questions:. When could patient trials commenceIf the Phase I trial in healthy volunteers is successful, a…Continue

 

Rupjani B's Page

Latest Activity

Rupjani B posted a discussion

Chicago DMD Families

Hi !This is Rupjani, my son Anuran was diagnosed with DMD in 2010 when we are in Wisconsin . We were there from 2010 to 2013 , after that we returned to India . Once again , we are back in U.S. , this time in Chicago . I would like to connect with Chicago DMD families. My cell no is 224-201-5885.( 2pm to 4pm preferable ) Thanks in advance.See More
Apr 6
Rupjani B is attending PPMD's event
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Webinar: Understanding Myostatin Inhibition at Online Webinar - Eastern Time Zone

November 11, 2015 from 1pm to 2pm
Nov 11th 2015, 1:00 pm ETJoin us Wednesday, November 11th at 1pm ET to learn more about the importance of myostatin inhibition research. This webinar will help to put context and clarity around this treatment pathway so families have a better understanding as they see clinical trials in this area. About Myostatin Inhibition: Scientists have long theorized that the body normally contains compounds that limit muscle growth. For example, certain breeds of cattle develop substantially more muscle…See More
Nov 11, 2015
Rupjani B replied to Rupjani B's discussion Santhera's Idebenone : Catena/ Raxone
"It is already proven that idebenone can help at least strength increase, those who are buying it from online and using it as supplement have experienced it. Santhera's idebenone can be a safer version than the idebenone we are buying online."
Oct 15, 2014
Moein replied to Rupjani B's discussion Santhera's Idebenone : Catena/ Raxone
"Does this mean that Idebenone can help those with respiratory failure but not to prolong walking and increase strength?"
Oct 15, 2014
David replied to Rupjani B's discussion Santhera's Idebenone : Catena/ Raxone
"My understanding is that approval is approval and the content on the label does not limit doctor's choices"
Oct 14, 2014
Kanch Randhawa replied to Rupjani B's discussion Santhera's Idebenone : Catena/ Raxone
"I agree with Rupjani. I personally have been taking steroids since age 16 and I am now 39. I have been diagnosed with a more severe form of Beckers and have been trached for over a year now, vented at night. I would think I would benefit from…"
Oct 14, 2014
Rupjani B posted a discussion

Santhera FAQ

I've just read Santhera FAQ family friendly version.It is written in question no 4 that:Currently, Santhera anticipates that the label sought will be restricted to patients who are not using steroids and who have signs of impaired respiratory function. Regulatory agencies often base the label upon the available data at hand and it should be kept in mind that all of the data collected in the idebenone phase III trial is from participants who were age 10 and older at the time. Santhera does…See More
Oct 2, 2014
Rupjani B is attending PPMD's event
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Webinar: Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne at Eastern Time Zone

October 15, 2014 from 12pm to 1pm
Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne: Results of the phase 3 double-blind, randomized, placebo-controlled DELOS trialSanthera Pharmaceuticals presented data of the Phase III DELOS trial during a webinar hosted by Parent Project Muscular Dystrophy on Wednesday, October 15th at 12pm eastern. Presenters:Prof. Gunnar Buyse (University Hospitals Leuven, Belgium); PI of the studyThomas Meier PhD, CEO of…See More
Oct 2, 2014
Rupjani B replied to David's discussion Mystery molecule at Pfizer
"Hi David! Is this the same news you are talking about? http://www.solid-ventures.com/ So, another committed parent drug developer in the line! What could be the drug they are working with Pfizer , Myostatin inhibitor? From PPMD'S CONNECT…"
Sep 12, 2014
Rupjani B replied to Moein's discussion What Shouid I Use, Idebenone or COQ10?!!!
"I'm giving my son Idebenone for 3 years which I buy from smart nutrition. I'm not sure, it is safe or not. Is there any info about Santhera's idebenone (Catena) which has positive result from ph3 trial. Are they applying for market…"
Aug 3, 2014
Rupjani B commented on Sharon Hesterlee's blog post No Exon Left Behind
"Hi Sharon! Thanks for this post. My son has a long chain deletion, exon 1 to 41. Three years back when my son was diagnosed I was told that my son was not eligible for exon skipping since he doesn't have exon 1. Since then my only hope is…"
Jul 22, 2014
Rupjani B replied to Rahul Singh's discussion Moving to the US. Which city could be a good place for Duchenne management?
"Hi Rahul! I was in US when my son was diagnosed at the the age of 5. Now my son is 8. We are back in India at the end of 2013 . We are planning to move to US once again this year to take my son either in Halo trial ( I'm not sure enrolling is…"
Jul 14, 2014
Rupjani B is attending PPMD's event
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Webinar: SMT C1100 - Phase 1 trial results at Online Webinar from 1-2 pm Eastern Time Zone

December 11, 2012 from 1pm to 2pm
The webinar will discuss the Phase 1 Clinical Trial results on SMT C1100 for the treatment of Duchenne as well as outlining the next steps for this utrophin upregulator program. Jon Tinsley, Senior Director of R&D and Richard Pye, Head of Communications at Summit plc will give a presentation and answer questions that have been submitted.Questions must be submitted by Friday, December 7 at noon eastern. If you have questions you would like to submit to…See More
Dec 5, 2012
Neil McLaughlin favorited Rupjani B's discussion Repeat Dosing of SMT C1100 for Treatment of DMD Meets Endpoints in Phase 1 Trial
Nov 7, 2012
Denise Bretsik favorited Rupjani B's discussion Repeat Dosing of SMT C1100 for Treatment of DMD Meets Endpoints in Phase 1 Trial
Nov 7, 2012
Rupjani B posted a discussion

Repeat Dosing of SMT C1100 for Treatment of DMD Meets Endpoints in Phase 1 Trial

Summit Corporation plc ('Summit' or 'the Company') REPEAT DOSING OF SMT C1100 FOR TREATMENT OF DUCHENNE MUSCULAR DYSTROPHY MEETS ENDPOINTS IN PHASE 1 CLINICAL TRIAL * New formulation delivers drug levels that are predicted to significantly increase utrophin production * Summit to progress utrophin upregulator into next stages of development Oxford, UK, 7 November 2012 - Summit (AIM: SUMM), a UK drug discovery company, announces that the repeat dosing of the utrophin upregulator SMT…See More
Nov 7, 2012

Profile Information

About me:
mother
About my family:
myself my husband and our only son
Name(s) of child(ren)/individual(s) with Duchenne:
ron
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
greenfield wi

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