Westley has been diagnosed with Duchenne Muscular Dystrophy.

END DUCHENNE!!

Seems like forever since I blogged. Sometimes all the other things in life take over and I forget to take time to thank our Warriors for all their love, prayers and support. You all have been there for us over the years and we appreciate each and every one of you. We are off to Cincinnati Children’s Hospital for the last week of August. I’ll be sure to send out an update of the week’s adventures and medical results.

In June I attended a conference in DC held by an organization called Parent Project Muscular Dystrophy. I had heard of them after Westley’s diagnosis but not until the last year have I learned of how they are caring for those affected with Duchenne.

Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—their mission is to END Duchenne.

They invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. They advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. They demand optimal care, and they strengthen, unite, and educate the global Duchenne community.

I left the conference amazed at what they are accomplishing and full of hope for Westley’s future.

On September 19th we will be hosting our 3rd MD Palooza benefit concert; all proceeds this year will be donated to PPMD to advance them in their fight to END DUCHENNE!

For those that are local I hope you can make it out to the event.

For those that wish to help us back this organization I ask that you make a tax deductible donation here http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

 Please check out the PPMD website to learn more – www.parentprojectmd.org

 

Jessica & Friends at the END DUCHENNE Rally in DC!

Jessica & Friends at the END DUCHENNE Rally in DC!

 

MD Palooza!!

Save the Date:

September 19th @ 2150 Anderson Hwy, Powhatan, VA 23139

Gates Open at 4PM

Adults – $10 Kids under 17 – FREE

Proceeds will benefit Parent Project Muscular Dystrophy

http://www.parentprojectmd.org/

We have booked 3 of Richmond’s best bands that play 80’s, 90’s, and new party rock!

Red Light Romeo*Age of Excess*Monkey Fist

There will be food and beverages for all to enjoy. Its family friendly folks so bring everyone you know!

 

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