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Hand In Hand – Rare Disease Day

Rare Disease Day - February 28, 2013

Rare Disease Day – February 28, 2013

“The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” ~ Mitch Albom

“As we work to create light for others, we naturally light our own way.” ~ Mary Anne Radmacher

I have Stiff Person Syndrome, a diagnosis that afflicts one in one million.   It is estimated there are 300, possibly 400, individuals in the United States with SPS.  We are a very small community in the definition of “rare.”  A rare disease is categorized as a diagnosis of fewer than one in 200,000.  There is estimated to be 7,000 rare diseases.  (NORD information)  Collectively, one in ten individuals has a rare disease — 30 million Americans.  Living with social misunderstanding and isolation, finding knowledgeable healthcare, and facing daily struggles and challenges are issues I share with everyone diagnosed with a rare diagnosis, not just Stiff Person Syndrome.  We are the Rare Disease Community.  Together we are strong.

Jacksonville Landing - Inside Display

Jacksonville Landing – Inside Display

February 28, 2013 was very special to me.  I was involved in Rare Disease Day.  From my personal endeavor of running a 5k and honored as a guest blogger for the NORD blog (National Organization for Rare Disease), I participated with others in my area on the 28th.  Cynthia did an amazing job organizing the first-time event.  Meeting another individual with Stiff Person Syndrome was an unexpected and rewarding experience.  Sharing was an encouragement for each of us in the group along with being informative for interested onlookers.

Knowing other groups/individuals, world-wide, were doing an outeach of awareness knitted us into a global fabric of unity — one voice.  Hear us, see us… understand, care.  In Washington DC, the Rare Disease Legislative Advocates (RDLA) had several days of hearings on our behalf.  To be a participant, in the equivalent of The Rare Disease Olympics, gave purpose and meaning to my diagnosis.   With thoughts swirling in my mind for next year and the months leading to it…

Hand In Hand

Hand In Hand

Copyright © 2013

Dedicated to the Rare Disease Community — Olympians, every day, with every breath.♥

5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Guest Blogger on NORD – Rare Disease Day

Debra-Richardson

 STIFF PERSON SYNDROME: A FIGHT TO THE FINISH LINE
February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,

Debbie

Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013

NORD SPS Research Grant

iframe>January 17, 2011

National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome

I am really excited about this research grant for several reasons.

1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure…awareness for us! 😉

2) Lundbeck’s continuing interest & involvement in NORD’s outreach through Rare Disease Day sheds light on how many are touched by a “rare” disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.

3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. 😉

4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.

5) Rare Disease Day has grown to epic proportions–worldwide in conjunction with Eurodis, facebook, media events, blogs…in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year’s USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)

6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! 😉

I hope this research grant gifts you with encouragement that with time, every little thing “one” may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.

Rare Disease Day

Hope on the wings of angels.

Copyright © 2011