"Dear Sam,
I totally understand that the diagnosis is very hard to accept but always remember that Duchenne or No Duchenne, your beautiful son is 2 years only now and never will be again.. so take one day at a time and enjoy everyday with him. I have…"
-
Alpa Khushalani
- Female
- Lake Zurich, IL
- United States
- Featured Blog
- Discussions (11)
- Events
- Groups (2)
- Photos
- Photo Albums
Alpa Khushalani's Groups
Alpa Khushalani's Discussions
Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting
Started this discussion. Last reply by Shelly Mar 13, 2016. 6 Replies 0 Favorites
Dear Friends,Sarepta is running a trial at 3 sites recruiting a total of 12 patients for a dose escalation study of 12 weeks followed by open label extension of their exon skipping 45 drug SRP-4045…Continue
Advice on getting a Service Dogs
Started this discussion. Last reply by Alpa Khushalani Oct 5, 2015. 3 Replies 0 Favorites
Hello Friends,Our son Krishna is almost 8 yrs now and mobile for the most part. This year at PPMD we saw lots of families with service dogs and were strongly advised to get one for our son as it…Continue
Tags: assistance, dog, dogs, Service
Prednisone daily versus weekend (high dose 2 days per week)
Started this discussion. Last reply by Alpa Khushalani Apr 30, 2015. 3 Replies 0 Favorites
Dear friends,Our son Krishna was diagnosed last Oct and he turned 7 in December 2014. He has been on a weekend dose of Prednisone for a little over 6 months now. We started at 50mg per day and have…Continue
Tags: dose, weekend, prednisone
Welcome, Alpa Khushalani!
Latest Activity
Alpa Khushalani replied to Chris's discussion Please Help - 5 yo Son Diagnosed - We are just overwhelped and broken hearted"Hello Chris,
Sorry to read about your son's diagnosis. You have taken a very important step in gaining support by joining PPMD. This is a wonderful group of people "who get it" and always ready to provide guidance. We were…"
Alpa Khushalani replied to Nida Zuberi's discussion What supplements/ vitamins combination works"Totally agree with jiasusa5. You definitely need to get the correct Calcium and D3 dosing units based on your son's current levels. We were diagnosed when our son was 6 and totally understand the emotions. Just take one day at a time and slowly…"
Alpa Khushalani replied to Jason Darienzo's discussion BioMarin Announces Withdrawal of Market Authorization"This is a sad moment for us all parents. The disease itself is challenging and the drug approving authorities dont make it any easier. Hoping that the other companies continue to put in efforts and help us cure duchenne"
Alpa Khushalani commented on Pat Furlong's blog post Every single carrier."Thank you for looking out for us Moms"
Alpa Khushalani commented on Pat Furlong's blog post Changing the Paradigm: The Eteplirsen Ad Comm"We are ever so grateful to you Pat for continuing to motivate our community and giving us hope even in the face of continuous disappointments. Thank you so so very much ! "
Alpa Khushalani is attending PPMD's event
PPMD's Every Single [One] Tour: Chicago, IL at Chicago, IL
August 19, 2016 all day
Registration for this FREE day-long meeting for families is now open! Click here to register. ------In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD is launching a multi-year community experience called the Every Single [One] Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the Every Single [One] Tour will bring updates on research, advocacy, and…See More
Shelly replied to Alpa Khushalani's discussion Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting"Rahul
Please check with nationwide.. They might recruit for 45 within 4-5 months."
Jay Griffin replied to Alpa Khushalani's discussion Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting"I am curious as well"
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."
Alpa Khushalani is attending PPMD's event
2016 Annual Connect Conference at Orlando, FL
June 26, 2016 to June 28, 2016
Registration is now open for PPMD's 2016 Connect Conference!Parent Project Muscular Dystrophy's Annual Connect Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than…See More
Alpa Khushalani commented on Annie Kennedy's blog post Advancing Targeted Therapies for Rare Diseases Act Goes Before HELP Committee"Many congratulations to all of us. Thank you PPMD. We are one of the families that are waiting on trials for follow on exons and truly appreciate this effort."
Alpa Khushalani commented on Abby Bronson's blog post PPMD Announces Gene Therapy Policy Forum"Thank you so much to PPMD for keeping our community always at the forefront of the next battle to win the war against Duchenne. Looking forward to the report from the discussion"
Rahul Deshpande replied to Alpa Khushalani's discussion Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting"Hello Alpa,
You are right the trial will hopefully start in 2nd quarter, yesterday I got a call from Sarepta and they said that the trial will start sometime in 2016. My son is 10 and ambulatory eagerly waiting for 45 skipping trial. We should…"
Alpa Khushalani replied to Alpa Khushalani's discussion Sarepta Exon Skipping 45 amenable - limited or no ambulation dose titration study is recruiting"Hello Rahul,
Sarepta plans to start trial for ambulatory boys hopefully early 2nd quarter of 2016 per my discussion with them. My son Krishna is 8 and ambulatory so I'm also eagerly waiting for the trail to start. "
Profile Information
- About me:
- I'm a stay at home mom enjoying time taking care of my 3 boys. Krishna (8 yrs), Eshan (4) and Vihaan (18 months) as of Dec 2015.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Krishna
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City:
- KILDEER
- State:
- Illinois
Comment Wall
- No comments yet!
Need help using this community site? Visit Ning's Help Page.
 |
 |
 |
Events
-
Miles for Matthew 5K/10K
September 30, 2017 all day – Greensboro, NC
0 Comments 0 Favorites -
Coach to Cure MD
September 30, 2017 all day – National
0 Comments 0 Favorites -
Run For Our Sons Peace, Love, Run 5K
September 30, 2017 all day – Dupree Lake Park
0 Comments 0 Favorites -
2017 Bank of America Chicago Marathon
October 8, 2017 all day – Chicago, IL
0 Comments 0 Favorites
© 2017 Created by PPMD.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
