Kurt+Peter Foundation

07/05/2022

Looking forward to the first LGMD Externally-Led Patient Focused Drug Development meeting with the Food and Drug Administration:

/PRNewswire/ -- On September 23, 2022 at 10am EDT, a coalition of limb-girdle muscular dystrophy (LGMD) nonprofit organizations will lead an Externally-Led...

12/09/2020

Thrilled that Kurt is leading a cooking class with Sarepta Therapeutics!

Connecting with patients is integral to our work at Sarepta. It keeps us motivated and focused on the impact of our work. While the in-person meetings that so often grounded us are now challenging due to the pandemic, we’ve been able to get creative. On Wednesday, our team is hosting a virtual cooking class with Kurt from the LGMD non-profit Kurt+Peter Foundation. Kurt will share his talents in the kitchen and try to prepare a bunch of science-minded employees 😉 for the holidays. Welcome Kurt!

09/14/2020

Kurt+Peter Foundation is excited about two upcoming muscle meetings at which research relevant to our mission will be presented. First, on September 25, Dr. Senda Ajroud-Driss of Northwestern Medicine will present at the 2020 Muscle Study Annual Scientific Meeting (https://musclestudygroup.org/events/2020-annual-meeting/) regarding the use of weekly low dose steroids in LGMD and Becker muscular dystrophy (https://clinicaltrials.gov/ct2/show/NCT04054375). KPF funded the study.

Second, during the World Muscle Congress from Sept. 28 - Oct. 2, 2020 (https://www.wms2020.com/), Sarepta Therapeutics (https://www.sarepta.com/) will present on various muscular dystrophy topics, including gamma-sarcoglycan gene therapy for treatment of muscle deficits in LGMD2C mice. KPF helped fund related research at Nationwide Children’s hospital.

Weekly Steroids in Muscular Dystrophy - Full Text View.

06/08/2020

This morning Sarepta announced very positive results from its Phase 2 trial of gene therapy in LGMD2E. The high dose cohort showed 72% expression of the missing protein, and the one year data from the low dose cohort showed significant and continued functional improvement (i.e. the patients were gaining strength). There were limited safety issues from the high dose cohort (one patient had severe dehydration, which was treated). This is great news for LGMD2C patients because the same vector and promoter will be used for 2C. Sarepta will be meeting with the FDA during the resto of 2020, and it sounds like Sarepta will have more news for 2C in early 2021. Congratulations to the Sarepta team, and particularly to Dr. Louise Rodino-Klapac who has led the effort!

06/07/2020

Tomorrow (Monday, June 8), at 8:30 am Eastern Sarepta will present data regarding its gene therapy for LGMD2E. This data is important for the LGMD2C community because Sarepta is taking the same approach, including the same viral vector, for LGMD2C. Kurt+Peter Foundation funded the preclinical work at Nationwide Children's Hospital for LGMD2C. Please see

The Investor Relations website contains information about Sarepta Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.

03/19/2020

Today, Sarepta shared a community update: www.sarepta.com/community-update-covid-19-March-19-2020

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12/12/2019

Yesterday, Kurt and Peter were seen again by the legendary Dr. Jerry Mendell at Nationwide Children’s Hospital. We also discussed with Dr. Mendell how the Kurt+Peter Foundation can help LGMD2C patients get seen at Nationwide Children’s to be evaluated for becoming part of an available cohort for upcoming clinical trials. Stay tuned for our further announcements about this plan. Thanks!

09/01/2019

KPF just attended the National Limb Girdle Muscular Dystrophy Conference in Chicago. Great conference sponsored by The Speak Foundation, and admirably chaired by Brad Williams of the Jain Foundation. The picture is of the final panel with Drs. Jerry Mendel, Elizabeth McNally, Louise Rodino-Klapac, Kathryn Wagner, Matthew Wicklund, and Jeff Chamberlain.

12/15/2018

Good luck to Texas Performing Arts and Medical City Plano for their performance, and thanks to them and the Rizzo family for raising funds for treatment for muscular dystrophy (LGMD2C).

TOMORROW! At the closing performance of North Texas Performing Arts' production of Scrooge - the musical Medical City Plano will present a check to the Kurt+Peter Foundation for Muscular Dystrophy!

12/13/2018

In late November, the Kurt+Peter Foundation met with Myonexus and Sarepta. Myonexus is targeting a 2020 clinical trial for LGMD2C, although there is some fluidity in the schedule due to manufacturing capacity. We are excited about the prospect of the clinical trial, and KPF plans to do all it can do to support that effort.

09/28/2017

Our new website is up with recent pictures of the boys. If you haven't seen it yet, please take a peek at: https://www.kurtpeterfoundation.org/