jett logo new
                   March Update
                      


We spent the early part of this month making progress in our nation's capital as part of Rare Disease week, meeting with critical decision makers like Senator Keating. Other work included a visit to NYC to receive generous support from Portfolios for a Purpose and we are gearing up for our summer activities. See below to learn more. Save the date for the Jett Golf Classic, Camp Promise and the JettRide. Lastly, it's not to soon to start thinking about triathlon teams, check out the Gals for Cal and Tri for Jett. 


Please join us for a program or with a donation to end Duchenne. 

Thank you and happy spring!

christine signature   

Thank you to Portfolios with a Purpose! 

Christine McSherry and Jenn McNary accept a check from Matthew Turk at the award ceremony. 
Thank you to Matthew Turk and
Portfolios with a Purpose for donating $41,000 to the Jett Foundation from their annual fantasy stock competition! Matthew participated for a full calendar year, through grueling ups and downs in the market, to win big for the Jett Foundation. We are honored for this generous support and send a huge thank you to Matt and the team at Portfolios with a Purpose. 

A huge thank you also to Last Minute Productions and Jett Board Member Kristin Daly for help in putting together our award acceptance video. Check it out here. 

 

Working Together: Rare Disease Advocacy Week

 

Left to right: Jenn McNary, Christine McSherry, Senator Bill Keating (D-MA 9th District), and Jackson McSherry


 

The Jett Foundation and the Duchenne community proudly  joined Rare Disease Legislative Advocates and 200 rare disease advocates in Washington DC last week for Rare Disease Week. Advocates stormed the capital meeting with representatives, attending panel discussions and presentations, and working together to make the voice of rare disease heard and push for legislation. 
 
 

Spring and Summer are on the way!
We have good things to come- get involved.


The Jett Golf Classic

Save the Date

June 3rd, 2015

 

Thanks to our newest sponsor!

south shore savings bank  

 

Great sponsorship opportunities are available, email Maura. 

 

 

 

Camp Promise Is Coming Your Way!

  • Camp Promise-East: July 13-18
  • Camp Promise-West: August 24-29
  • Camp Promise-Rockies: 
    Coming soon...
Applications will be online at www.camppromise.org in mid-March.

 

 

 

JettRide 2015:

 

July 1-August 7, 2015

          

For more information and to register, click here.

 

FDA Head Margaret Hamburg Stepping Down

 

 The Jett Foundation has had the honor of interacting with Dr. Hamburg and are grateful that she has been an advocate for personalized medicine. We hope that the incoming commissioner has similar ideals and is committed to making positive change to speed up approvals for deadly diseases like Duchenne. 

 

Get Involved with Discussion of 
Measuring Dystrophin 

The Food and Drug Administration (FDA) is holding a public scientific workshop on March 20, 2015, to discuss dystrophin protein quantification methodologies for human tissue. This workshop is being cosponsored by the National Institutes of Health (NIH). The purpose of the workshop is to discuss currently available methodologies and to identify scientific knowledge gaps and opportunities for improving dystrophin protein detection in the context of drug development.

68 Evergreen Street, Suite One
Kingston, MA 02364
(781) 585-5566