Thank you to everyone who attended the Boston, Inspirational Women event yesterday, thank you so much for coming to breakfast at Alma Nove. It was an incredibly moving morning and I feel so lucky to have been surrounded by so many truly inspirational people. It was powerful to share our stories, and I’m inspired that together we are changing the world.

I’m grateful for the outpouring of support for the Jett Foundation and the Duchenne Alliance. I look forward to connecting soon with everyone on an individual basis to see how we can work together. Thank you so very much for your support.

I’d also like to encourage or challenge (because I do like to set ambitious goals) everyone to reach out to others you met at breakfast and help each other. Let’s meet again next spring, share stories of our successes and think harder about how together we can change the world, not only for the Duchenne Community and the Jett Foundation but for other causes as well.

I’d love to see this event turn into something bigger and happen on an annual basis. Inspirational women make the world go round and it would be a wonderful tribute to Kerry, Bill and Carol Beggy to make this a yearly event. I look forward to May 2013, following Mother’s Day – where I can present to the group the progress made with Jett Foundation, and the Alliance. I encourage you to consider inviting someone else who inspires you to next year’s event, as our circle grows, so will our resources and those that we can help.

Again, I’m so grateful you were able to attend the breakfast. Many thanks to Paul and Alma Wahlberg and the whole staff at Alma Nove for their help with the event and for letting us enjoy their beautiful restaurant.

Due to the size of the file, we’ve had to break it up into two parts. Please check them out below.

Click here for the first page of the brochure

Click here for the second page of the brochure

Check out their website for more information!

Come early and enjoy the beach and delicious food on the Red Parrot’s outdoor deck overlooking Nantasket beach.  We’ll have drawings and prizes and a promise to deliver the best in Classic Rock; Beatles, Stones, Hendrix, The Who, Cream, Led Zeppelin, and so much more!

Proceeds will be donated to the Jett Foundation which funds the research and treatment of Duchenne muscular dystrophy.

More info here

What: Red Parrot Rock for Duchenne Muscular Dystrophy

When: Saturday, June 16, 2012 @ 7:00 PM

Where: Red Parrot, Nantasket Beach, Hull, MA 02045 (781.925.1115)

$15 dollars at the door

Kids free (12 and under)

A portion of every purchase you make on Phil’s Shops goes directly to the Jett Foundation. What’s really cool about Phil’s Shops (ok, there are lots of things that are cool about it) is that you get to see exactly how much of your purchase goes through to the Jett Foundation.

So say you happen to buy a few 1 lb tins of Double Chocolate Chunk cookies for your favorite Duchenne-specific organization’s blogger, 7.50 of your purchase price would go directly to the Jett Foundation, and the cookies would go to the blogger.

Check out Phil’s Shops to learn more and to support the Jett Foundation.

Camp Promise East takes place July 29-August 4th in Hebron, Connecticut.  Camp Promise West takes place August 20-26th in Vaughn, Washington.

 Camp Promise-East applications must be submitted by Tuesday, May 29, 2012.

Questions about Camp Promise East? Contact Libby at camppromiseeast@gmail.com

Camp Promise-West applications must be submitted by Monday, June 4, 2012.

Questions about Camp Promise West? Contact Terin at camppromisewest@gmail.com

Calling All Volunteers!

Looking for counselors, medical staff, entertainers, fundraisers, and logistics staff to help make this the best year of Camp Promise yet. If you’re interested, please complete this online volunteer application. 

For more information about camp check out Camppromise.org

Boulder, CO, March 11, 2012 – The Duchenne Alliance, a group of nearly 40 international independent foundations focused on Duchenne Muscular Dystrophy, has taken a groundbreaking step toward winning what it calls “the ultimate race against time.”

The leaders of Duchenne non-profit organizations agreed at a meeting last week on the mass implementation of the DUCHENNE DASHBOARD, an innovative research grant management system that will facilitate an unprecedented level of collaboration among the many foundations, patient advocacy groups, and scientists dedicated to finding treatments and cures for Duchenne.  Duchenne is the most common and lethal genetic disease diagnosed in childhood.  There are currently no life extending treatment options for the over 300,000 males worldwide living with the condition, which usually limits life expectancy to the mid 20s.

The Duchenne Dashboard provides scientists and foundations with a single entry point for proposals to advance Duchenne research.   Scientists can use the dashboard to securely submit their projects and member foundations and their scientific advisors can consider and give feedback on them instantly.   The tool also enables foundations to quickly collaborate and contribute funds to promising projects.

“The Duchenne Dashboard is going to radically improve and expedite the scientific process in the field of Muscular Dystrophy.  The non-profit foundations came together and set the new standard for effective biomedical funding,” said Duchenne Dashboard creator Carlo Rago of OpenOnward.  “The platform is now available to all neuromuscular foundations aiming to conquer disease,” he said.

The Duchenne Alliance was formed last year to promote better collaboration among the many non-profit organizations around the world committed to conquering Duchenne and improving the lives of those living with this progressive and debilitating muscle wasting condition.  “The primary goal of the Alliance is to quickly identify, understand, fund, and implement the most promising research,” said Christine McSherry of the Duchenne non-profit Jett Foundation.  “The fastest way to success is shared knowledge and collaborative funding,” she said.

About the Duchenne Alliance:  We are an alliance of independent Duchenne organizations dedicated to advancing our missions to improve quality of life, care, and treatment of those affected by Duchenne. Our goals will be achieved by building trust, sharing knowledge, leveraging resources, and streamlining business practices. Each organization will be held to achieve their own mission as we collectively serve the entire Duchenne community.   Please visit www.duchennealliance.org.

About OpenOnward: We employ open science solutions that empower individuals, groups and societies. Our core products were developed to expedite the entire scientific process by facilitating deeper, more meaningful connections between scientists and society.   Our team consists of leaders in biomedical research and open science.  We are dedicated to the greater good. Find us on the web at www.openonward.org.

On behalf of the Jett Foundation, and families affected by neuromuscular disorders, THANK YOU to Dave Chaunt, the Gentleman’s Hockey League (GHL), and the Boston Bruins Alumni, Black and Gold Legends for a great event Sunday, March 18.

As pictured above, 14 young men affected by neuromuscular disorders were given a once-in-a-lifetime opportunity, to get on the ice with the Boston Bruins Alumni.  The true success of the event was evident in each of the boys faces as they took the ice.

Although finding a cure is the goal, the Jett Foundation spends a significant amount of time and resources helping families live life to its fullest and provides many adaptive sports programs, opportunities and scholarships for children with disabilities.  Thank you for helping our boys fulfill a dream, playing on the ice with the Boston Bruins Alumni. The Jett Foundation continues to be a leader in this fight and is grateful to organizations like the GHL and Boston Bruins Alumni who support our efforts and mission.

We have been told by lead doctors that Duchenne is a solvable problem, that the only thing that stands in our way of a treatment is money.  As a parent, that is something very hard to swallow.  So, from the bottom of our hearts, we thank you for joining us in the fight as we push to find a cure!

-Christine

In this letter, Cory talks about why he would like a buddy bike, which would enable him to do something most kids his age take for granted: ride a bike.

Cory says:

I could explore up the Rattlesnake Recreation area and climb Lolo Pass. We could go up trailheads and ride by the river. We could go around the neighborhoods in Missoula and any park in Missoula. I like to think about stuff on the bike.

Two JettRiders, Drew and Mac, are riding on behalf of Cory Stalling. Read the rest of his letter here.

Annual Conference March 9th – 10th

Hotel Boulderado, Boulder, Colorado

March 9th Organizational Updates
9:00 – 11:00 Breakfast Breakfast with John Crowley, Amicus Therapeutics
11:00 – 11:15 Break
11:15 – 12:00 Welcome Christine McSherry, Jett Foundation
12:00 – 1:00 Lunch
1:15 – 2:45 Session 1 Projects in the Community (Half an hour each)

Parent Project Muscular Dystrophy – Bob McDonald

Cure Duchenne – Debra Miller, Spironaldactone/Lisinopril

Protandim – Dr. Joseph McCord/Kimberly Procko

2:45 – 3:00 Break
3:00 – 4:30 Session 2 Projects (Continued)

Halo Therapeutics – Marc Blaustein, CEO

RACE MD, Chris James
4:30- 4:45 Break Snacks
4:45 – 6:00 Session 3 Follow up on Presentations and DuchenneDashboard
7:00 – 7:30 Dinner Duchenne Alliance Discussion

March 10th Nonprofit Management and Infrastructure
7:00 – 8:00 Breakfast Database Comparisons with Katie Cutler, Jett Foundation
8:00 – 9:45 Morning 1 Linda Smith, Nonprofit Management Accounting and Financial

Statements, Smith & Smith, CPA

How financial statements & annual reports can help make your   nonprofit more competitive

10:00 – 10:15 Break
10:15 -12:00 Morning 2 Nonprofit Management Accounting and Financial Statements ll
Smith & Smith, CPA
What are the essential marketing pieces to a financial statement
12:00 – 1:00 Lunch Fundraising Round Table – Discussion and exchange
1:00 – 2:45 Afternoon 1 Nonprofit Organizational Management Series l
Susan Spero, Spero & Company Consultants, LLC

Strategic Planning: what it is and isn’t, why it often fails, why it’s not optional

2:45 – 3:00 Break
3:00 – 5:00 Afternoon 2 Nonprofit Organizational Management Series ll
Susan Spero, Spero & Company Consultants, LLC
What to keep in your toolbox – tools for the nonprofit leader
5:00 – 6:00 Closing Wrap Up and Next Steps