Children's Hospital of Richmond Presents Spirit of
Advocacy Award to Todd and Edibell.
This award is given annually to parents who have
been strong advocates for their children . We received this
award for
raising awareness and funds for Myotonic Muscular Dystrophy. The
hospital gifted $300.00 to the Stone Circle of Friends, made a press
release, and will feature our story in a number of their
publications.
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The Stone Circle of Friends is an official 501
(C) (3)
Non-profit!!
Thanks to Giles Stone (Papa) we
will act as a subgroup of The Myotonic Muscular
Dystrophy
Foundation that he has established in Harrisonburg.
The Stone Circle of Friends can now function more independently and
accept donations that are tax deductible.
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| In Sept. Todd attended the International MMD Conference in
Milan and the National Conference in Los Angeles.
These two conferences were an excellent opportunity to meet
others who
are also very invested in finding a medical breakthrough for MMD.
The
Milan biannual conference provides an opportunity for researchers
to
exchange ideas, collaborate in their investigations, and present their
research findings. The L.A. Conference was geared more towards affected
families. It was a wonderful opportunity for Todd to personally meet
and connect with others with whom he has gotten to "know" via
phone and
Email. He was able to video many of the families so we can
provide more
educational footage in our films of how this illness can devastate a
family.
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| We recently received a very generous donation from
the Elis Olsson Memorial Foundation, in the name of Sture Olsson a late
friend and patient of Dr. Eddy Pizzani.
Shirley Olsson
made a $25,000 contribution to the UVA Health
Foundation for Dr. Mahadevans' MMD research. Bringing the
total funds contributed by the Stone Circle of Friends to a grand total
of $188,000. Wow!!!!
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| Many Projects are on the Way...
Edibell is on week #4 of her yoga
challenge...you are still welcomed to pledge, any amount is
great . On
the Last day of the challenge, Saturday October 27 at 10am, there
will
be a Pack the House for a Cure held by Bikram Yoga of Richmond,
at their west-end studio. If you would like to see 60+ people doing
yoga in 107 degrees please drop in. The support from the studio has
been overwhelming and if the cameras can stand the heat we shall make
the news. Either way, we are making history.
Also, Tuckahoe Elementary School is getting
ready for the Coins for a Cure Project, in which the
children will donate coins collected throughout the school year. Shayne
Gordon and Meg Bryant are very busy
stenciling all 500 jars while Emmie Lacy and Maggie
Stuart are working on placing our logo stickers on 500 lids! Suntrust
has generously agreed to count the coins for us, at no cost. Papa Stone
has agreed to match the funds! Wow!!!!!
Sian Byron has been knitting scarves since
April 07 when we got the diagnosis. She is donating her time and
beautiful wool from her home in Wales. She will be selling them at 5807
Patterson Avenue, Richmond, all funds will go to MMD research.
Todd and Edibell are working on an educational
pamphlet to help undiagnosed adults and their doctors learn
about MMD symptoms. In particular, it will be aimed to inform
adults in
their childbearing years. Like Edibell, there are adults with few or no
symptoms that will have very affected children if MMD is not rule out.
Lisa Martin, Maria Jancowski and Edibell
are
planing our big event/Gala for the evening of Saturday April
5th, our 1 year anniversary. It will be great to have all
of
our friends under one roof, enjoying a great dinner, music and dance.
We are fortunate to have the Honorable Tim Kaine as a
special guest. We have a great deal to celebrate. So save the
date!
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Holiday Offer from W. Hirsch Oriental Rugs
Sally and Bill Hirsch have a
beautiful store in Carytown with an amazing array of rugs, fine
furniture, Tiffany style lamps, and home accessories. They also
offer
cleaning, repairs and appraisals of rugs. They
will donate 10%
of purchases to The Stone Circle of Friends in the
months of October
and November. If you wish to shop there simply print this
email and present it at the time of purchase.
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| On a more personal note,I want to tell you
about our
boys....Nicholas and Elliott
continue to fight the many symptoms of MMD on a daily basis. Despite
their challenges they are happy, they maintain a sense of
humor, and
continue to treat others with love. This past week,Nicholas was
fitted
for leg and ankle braces as he is getting weaker in his
lower
extremities. We are very proud of their perseverance and positive
attitude. I believe that when this illness is arrested in some form,
they will have developed a tremendous fighting spirit and a true sense
of what really matters in life. |
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