Need to Update Your Wardrobe?

The Muscular Dystrophy Association has partnered with Sevenly to raise money to send kids to MDA Summer Camp.  The shirts are super cute!  

Check them out here.

Looks like they're only about $3K away from their $27,000 goal!

Happy March!

It's March.  Support the MDA- buy a shamrock!

It Has Been One Year!

I can’t believe we’re already in September!  The 17^th of this month is the 1 year publishing anniversary of The Graceful Art of Falling.  In honor of this anniversary, I want to share some of the wonderful things that Graceful has accomplished this past year.  The Graceful Art of Falling…:

• Had a table at 2 book signings
• Was talked about at two different MDA events
• Got stocked at two bookstores (Bookworks in NM and the Original Vermont Store in VT)
• Donated a portion of proceeds to the FSH Society 
• Got connected with fans on facebook, twitter, this blog and the website
• Received several great reviews on amazon

Some ideas for 2014-15 include:

• Starting an email sign-up for a quarterly or bi-annual newsletter
• Getting Graceful in the “free books” section of amazon for a few days
• Participating in a couple more book signings
• Donating more of the proceeds to another organization that supports individuals with muscle disorders
• And, possibly starting another book… which may be nothing like Graceful.

Show Your Strength!

Don't forget to tune into the MDA Show of Strength Telethon this Sunday!

If you want to learn more about one woman's experience with MD, read The Graceful Art of Falling...

I Would Recommend...

I try to post some cool things that I share on facebook in this blog.  And I regularly share other blogs, especially those on MDA Transitions.

If you feel you would like to understand more about the many muscle disorders, I would recommend reading...

Forgiving Yourself

The Importance of Humor: From Frustrated to Funny

The Importance of Staying Active

FSH Documentary

This is an amazing documentary about living with FSH musclular dystrophy.



It's worth the watch.

MDA Support

"Have you met Jenny?" I was asked as I sat at a table at the MDA holiday party.  

"No, I haven't, it's so nice to meet you," I said as I twisted around in my chair to face her.

"So, you wrote a book?"  Jenny asked.

"Yes, I just published it in September, it is about my experiences with FSH MD."

"Oh, how does that affect you, if you don't mind me asking?"

"Well, it affects my facial muscles, my shoulders, arms, and legs... among other things.  Stairs are very hard for me."

"When did you first start having symptoms?  How old are you now?"

"When I was 12, and I'm 28 now." 

"But you're so young... that's terrible."

"It is... there are even younger ones here who are going through this, or worse."  I replied as I looked around the room.  At least half a dozen kids, all boys, were obviously afflicted with some type of muscle disorder. 

"I didn't start getting symptoms until I was older, but many of my family members on my dad's side have OPMD. My eyes are getting bad, and I am having trouble swallowing,"  Jenny continues.

"I'm sorry to hear that, what about your kids?"  I asked as her son, who must have been about 10, sat next to her listening to our conversation.

"Not yet, but I wish I knew I had this before I started having kids, I don't know if I would have made a different decision, but maybe..." She said.

I couldn't help but wonder how her son felt about her saying this... but, he seemed like an intuitive kid.  Maybe he knows she just says that out of concern and love for her children. 

"Well, we will definitely read your book, I'm sure my husband will enjoy it too, he is in a wheelchair."  She concludes.

This was the first MDA "event", besides the walk in 2011, that I had attended.  There were so many families, with young kids, who obviously depended on this community for support.  When I go to things like this, I am reminded how much bigger this is.  Bigger than just me, and bigger than just FSH MD.  It makes me want to work harder to increase awareness and continue to build networks with others who are doing the same.

MDA Shout-Out

I would like to give a shout-out to the New Mexico MDA. They had a lovely holiday party last weekend, and I was able to talk about the book for a few minutes.

We all need to keep spreading the word and raising awareness about muscle disorders! 


... I also found this awesome MDA blog for teenagers and young adults.  Check it out!

It's Giving Tuesday

I loooove the Giving Tuesday campaign.  I think it's awesome to be reminded that the holiday season is actually about giving.  After Black Friday and Cyber Monday comes #GivingTuesday which is a day to give back to your community.  It is only the 2nd year of the Giving Tuesday movement and some parts of the country are much more aware of this amazing day than others... 

I was so happy to see the FSH Society mention Giving Tuesday- they are receiving matching grants up to $300,000 for any donations made by December 31st.

The Muscular Dystrophy Association is also participating in the movement.

How will you give back?

So Many Muscle Disorders

The main reason I wrote The Graceful Art of Falling was to bring awareness to the many muscle disorders.  I recently learned the local MDA provides services for 40 different muscle diseases- and there are many more.  Check out the amazing blogs below which have been written about experiences with several types of muscular dystrophy.

Limb Girdle MD

Becker MD

Duchenne MD

The book is now in the design and layout phase.  Within 3 weeks the proofs will be done, and the design can be finalized.  So exciting!

The 2013 MDA Show of Strength Telethon is scheduled for this Sunday, September 1.  The MDA has been using telethons to raise money for muscle diseases since the 1950's!  The first Labor Day weekend Telethon was broadcast in 1966.  The fundraiser has raised nearly $2 billion in the last 46 years in order to advance research seeking treatments and cures for muscular dystrophy.

The show starts at 9pm EST.  For more information check out the MDA website.