Monday, August 24, 2009

Curtsy Bella - Charity Partner for FSH Research

Curtsy Bella - 2920 NE Blakeley St,. Seattle, Washington near U-Village.

On August 22nd Friends of FSH Research was honored to be the charity partner with a local boutique in Seattle. I was warmly greeted by Mary Jo and Danielle at Curtsy Bella as the shop opened. I enjoyed browsing through their shop full of great baby shower gifts, wedding gifts, party items, note cards and more! Friends of FSH Research was given 10% of the proceeds for the whole day!!

We are thrilled to have this new business partner take interest in and support Facioscapulohumeral Muscular Dystrophy research.

Please click on the flickr link above to take a visual trip through this fun shop -
or better yet, visit them in person or at their website

Many Thanks!!

Monday, August 17, 2009

STP - Riding for Research

Kalynn - Cruising for a Bruisin'

I rode the Seattle to Portland Bicycle Classic on July 11&12, 2009 in order to raise money for FSH research. The overwhelming support of donations was incredible. Thanks to Marimichael and Melissa for donating their STP registrations to auction off. They raised a little over $300. As well as my Grandma who brought in a lot of cash donations. And to everyone who donaited online... Thank you!! It was encouraging to see that there are many people who are pulling for a cure for this form of muscular dystrophy. It affects so many peoples lives and as more people work together it will help to move us toward finding a cure. (to read more see her blog entry)

A huge THANK YOU to Kalynn!!

Thursday, August 13, 2009

Risk of Falls & Injury for those with FSHD

This information is probably not surprising to those that live with the disabilities caused by FSHD but it may be eye opening to their loved ones. Hopefully, fall prevention steps can be taken in the homes of those with FSHD in order to decrease the number of falls and decrease the incidence of injuries.

Epidemiology and pathophysiology of falls in facioscapulohumeral disease

Corinne G C Horlings 1, Marten Munneke 1, Alice Bickerstaffe 1, Leonie Laverman 1,
John H J Allum 2, George W A M Padberg 1, Bastiaan R Bloem 1* and Baziel G M van Engelen 3
1 Radboud University Nijmegen Medical Centre, Netherlands 2 Universitätsspital Basel, Swaziland 3 University Medical Centre Nijmegen, Netherlands
J Neurol Neurosurg Psychiatry. Published Online First: 21 June 2009. * To whom correspondence should be addressed. E-mail:
Muscle weakness is a potentially important, yet poorly studied, risk factor for falls. Detailed studies of patients with specific myopathies may shed new light on the relation between muscle weakness and falls. Here, we examined falls in patients with facioscapulohumeral disease (FSHD), who suffer from lower limb muscle weakness.
This study provides insights into the prevalence, relevance and pathophysiology of falls in FSHD. We used a validated questionnaire as well as a prospective 3 month follow-up to examine the prevalence, circumstances and consequences of falls in 73 FSHD patients and 49 matched healthy controls. In a subgroup of 28 subjects, we also examined muscle strength and electrophysiologically assessed balance using body-worn gyroscopes. In the questionnaire, 30% of the patients reported to fall at least once a month, whereas none of the controls did. Injuries occurred in almost 70% of the patients. The prospective study showed that patients fell mostly at home, mainly due to intrinsic (patient-related) causes, and usually in a forward direction. Fallers were unstable while climbing stairs, rising from a chair and standing with eyes closed, whereas non-fallers had normal balance control. Frequent fallers had greater muscle weakness than infrequent fallers.
These findings demonstrate the high prevalence and clinical relevance of falls in FSHD. We also highlight the relation between muscle weakness and instability among fallers. Because patients fell mainly at home, fall prevention strategies should focus on home adaptations. As mainly intrinsic causes underlie falls, the impact of adopting balance strategies or balance training should be explored in this patient group.

Kalynn Rode for FSH Research - The STP

Kalynn met the challenge & rode the STP July 11th & 12th.

She raised more than $3,000 for Friends of FSH Research, funds which will go directly
to FSH research projects.

Thank you Kalynn!!

Visit Kalynn's blog & view the photos from her ride.

Wednesday, August 12, 2009

For My Father by Eva Sher

For my father who suffered from muscular dystrophy
Toward the end, when your
fingers could grasp neither pen, nor shoelace,
button, spoon, or violin bow,
you took my hand.
From the pocket of your coat, you
pulled the blue harmonica.
I sat while you arranged your
difficult limbs into the chair.
Elbows on knees, hands awkward—
cupping that small box
of metal and grid,
you played.
You played yellow—
sunflower, marigold, calendula—
the finches at dawn.
You played green—
laughing meadow, trembling anemones,
the woods…
Our walks in the woods!
You played blue—
you played blue so deep,
I fell to the bottom of it, and then
you played me back up
to the places where angels sing.
When the end came
there was no more music. Only
troubled breath and the sharp sound of that
harmonica slap-slapping against your knee.
“It’s no use, Maidie…it’s no use…”
But it was, Vati! It was!

This poem was written in honor of a gentleman with Facioscapulohumeral Muscular Dystrophy, Eva's father.

I thank Eva for sharing this with us all.

Tuesday, August 11, 2009

Gaining Insight Into Development of Human Disease

PHYSorg Science News
July 30, 2009

Scientists to gain new insight into earliest development of human diseases

July 30th, 2009

Scientists to gain new insight into earliest development of human diseases

Human embryonic stem cells.

In an Australian first, scientists from Sydney IVF Stem Cells and the Australian Proteome Analysis Facility (APAF) at Macquarie University will use human embryonic stem cells to track the development of genetic conditions such as down syndrome, Huntington's disease and facioscapulohumeral muscular dystrophy in their very earliest stages.

It is hoped the groundbreaking research will not only lead to a better understanding of how these debilitating diseases develop, but also to the discovery of new and effective drug treatments. (read the complete article here)

Monday, August 10, 2009

STP 2009 - Kalynn Dibble Takes the Challenge

Picasa Web Albums - STP 2009 - STP 2009

Kalynn took on the challenge to ride her bike from Seattle to Portland in order to raise money & awareness for Facioscapulohumeral Muscular Dystrophy. Truly a tribute to what one individual can do - she raised almost $3000 for FSHD research!!

Our Thanks to Kalynn - What an Inspiration!