Hope is a Journey….

Making a Difference

5:45 a.m. comes way too early, especially when you were up way too late the night before spending time with some pretty darn amazing individuals.  Ralph and I rolled out of bed like zombies fumbling for our clothes and stumbling to the shower – the BIG DAY was here.  Despite our horrible smelling – sweltering and steamy – cold water with no water pressure – hotel room at the Hilton in Gaithersburg – and the fact that they didn’t have the ‘cash’ to refund us our deposit as we checked out (that they seemed unphased by) – we were excited to break the day open like a much anticipated Christmas present on Christmas morning.  We set out for our half hour trek to the other hotel where our our day was slated to begin.

We arrived at the Marriott in Bethesda in time for breakfast, but had a little snafu with my power chair breaking (but just a bit). After about 20 minutes of Ralph tinkering with it (and saying a few choice words), we were back in business and ready to head to the meeting location. Despite a relatively minor bus glitch, our trek through the scenic roadways was just what we needed to wake up, enjoy the beauty of the day and energize each other for what promised to be a long but rewarding day…

You see…today wasn’t just ANY day…today was a day when nearly 300 people descended upon Capitol Hill in Washington, D.C. and spoke to legislators in one unified voice…and it was heard loud and clear!

Today…we made a difference.

Today…we were “Part of the Cure.”

Senator Barbara Boxer from California introduced Senate Resolution 490 (S. Res. 490) on Monday evening, and Representatives Eshoo from California and Tim Murphy from Pennsylvania launched a Congressional Caucus on Mitochondrial Disease.

Our main goal was not only to ask for support from both the Senate side and the House side, but to also raise awareness about Mitochondrial Disease and broaden their understanding about what day to day life is like for patients not only in their local communities but the nation overall.

Ralph and I were the only 2 representing Massachusetts, but – after having 3 successful meetings for the Immune Deficiency Foundation in March, we knew that what we were asking at these meetings would be well received.  Our legislators have always been very gracious and very supportive of our endeavors and we continue to be incredibly grateful for this.

Senator Brown’s aide, Laura

All 3 of our meetings turned out very positive with the aides feeling that our ‘ask‘ was reasonable – all we needed to do was wait to hear whether or not the legislators would sign on.

Senator Kerry’s Aide, Sasha (yes, an easy name to remember!)

We had a Canadian visitor, Carolyn, join us for our last meeting and I think it was pretty neat for her to even be able to share how Mito has affected her.

We even managed to sneak a little ‘race time’ in between meetings to lighten the mood up a bit!  (Hey…us Mito gals need to have fun too!)

We took a nice ride back to the hotel and check into a MUCH nicer, cleaner, more friendly hotel at the Marriott in Bethesda and then made our way down to the wrap up meeting.

Chuck took a moment to share a few inspirational words – as he always does – and they are always so motivating!

And then Cliff (the man who orchestrated and ran our successful day on the Hill) got up, thanked his fellow staff members for their efforts and encouraged us to continue our work on Facebook, Twitter, Blogs, and in our home states….which *I* fully intend to do once we’re back in MA *AND* once the “Action Alert” links are available (next week…so be on the lookout!).

After our meeting, I got to hang out with some pretty incredible people like the Wilkinson Family.  In 2009, Brittany Wilkinson initiated legislative efforts and legislation was named after her – sadly, she lost her battle with Mitochondrial Disease far too young…but her inspirational legacy lives on even in this Senate Resolution, which I think is pretty awesome.

I even got to sneak in a little bit of time with my far away ‘Mito Sister’ Rachael….

Ralph and I are now up in our hotel room on the 9th floor enjoying a beautiful view – unwinding and relaxing and appreciating the opportunity and honor that we have been blessed with  to be here and represent all who are affected by this disease.

Tomorrow starts a new day – and we are looking forward to sleeping in past 5:45 a.m. AND attending the first day of the United Mitochondrial Disease Foundation’s National Symposium.  It promises to be an incredible experience as it was when I attended in 2009.

I would be remiss if I did not send a HUGE shout out and THANK YOU to my mom, dad, Aunt Louise, niece Brittany and friends Sherrijean and Tracy for stepping up and helping out so Ralph and I would be able to take this trip.  We cannot even begin to express our gratitude.   It was a decision we went back and forth over as it is always hard to leave our munchkins – but we realized that we had a responsibility, not only to our family, but to those who could not make the trip out – we needed to go and be a voice on the Hill.  We also knew that the information at the conference would be valuable and we would be able to take home the things we learned and hopefully utilize this information to help our family and others.

Off to dreamland……

Love and Light,

Stefani

Comments on: "Making a Difference" (3)

  1. Randi Pennell said:

    Thank you for being a voice for all of us who were unable to attend. When I saw the picture of you, Carolyn and Amber the tears just started. Thank you, thank you, thank you.

  2. Rachael said:

    Awesome blog Stefani Thanks for being there for me at the banquet. You truly are amazing! Love your mito, sis!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: