Dear Friend,
We
hope you were among the 350 people who were able to attend this year's
Gala. It was truly a perfect night in many ways! We raised a lot
of funds for the research while having a great deal of fun. The
presentation was also very special as it brought together key
advocates and researchers who were able to describe this very winnable
fight against MMD.
Total amount raised after expenses was @ $80,000 and donations are
still coming in..... See the film and pictures on the Events page
on our web site. There are many good pictures which you can download
and print. With great gratitude, love, and hope for the future,
Edibell and Todd Stone
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 SCF
donates $82,000 to Dr. Mahadevan's lab.
The funds were raised by your generous donations for
the MMD Gala Night. At this time, donations by the Stone Circle to the
lab total $300,000. Thank you for making this night and
first year such a success! We hope you will return next year as we are
already planning another great gala- you will not be disappointed.
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The easiest way to give!!!
Don't miss
this Golden opportunity- When you recieve your golden gift
points in the mail this week
mail them to us at:
Stone Circle of Friends
8101 Lower Ralston Court
Richmond, Virginia 23229
When I turn them in to Ukrops, they will donate
to MMD research. Tell everyone you know...The more the
better!!! Thank you.
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 Ellwood Thompson's Local
Market
5% day for Stone Circle will be Saturday, May 17th.
Simply
shop at Ellwood on this day and they will donate 5% of your purchase to
MMD research. Volunteers will be bagging groceries and wearing our
Stone Circle T-shirts. If you can help we will be
glad to put you and your friends to work on a shift. Contact
Edibell. |
| Brett
Leake, a frequent guest on the Tonight Show with Jay
Leno, will be donating a night of laughter for the Stone Circle.
On Wednesday
June 11th, venue to be determined. Brett is in high demand
and it is truly a privilege to have him as our guest. See his website www.BrettLeake.com and you will understand
the magnitude of this event. Bob Battle, a local attorney and comedian
will be also appearing with Brett. Thanks to Bob we are able to bring
you this show.
Tickets can be purchased on our website for $50.00 each under
Events and on our home page. Your tickets are 100% tax deductible. You
may purchase dinner and drinks at your discretion. |
 Latin Party/ Fiesta
Colombiana Saturday, July 19th 7:30- Midnight.
I am
a bit biased but I love Latin parties because people dance ALL night from
beginning to end and there is always great food and drinks. We have an
absolutely amazing band donating their talent and time-Son Cuatro, led
by John Acevedo.The venue is also donated by the Knights of
Columbus. Tickets are available on our website under Events and on
our home page.They are $40.00 per person. 100% goes to the research!
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 All Saints Episcopal
Todd and I had the pleasure of speaking at All Saints
Episcopal Church about MMD and the Stone Circle. It was a great
opportunity to raise awareness and discuss the many issues associated
with loss and perseverance. We showed our latest film and had an open
discussion with questions. Todd and I would love to talk to any group
interested in learning more. Please keep us in mind if your are looking
for speakers for your organizations.
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 Coins for a Cure Project
Is coming to a close. On Friday May 2nd we will be
counting the change collected by the children of TES which will be
donated to research for several childhood diseases, MMD being one of
them. We will keep you posted on our progress. It has been very
touching for the children to contribute and many parents have been
moved by the sheer generosity of their children. It is very nice to see.
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New Legislation that opens doors to folks with
genetic Illnessess- This is GREAT!!!!
Senate Legislation Bars Employers From Firing Based on Genetic
Tests
 April 24, 2008
3:04 p.m.
WASHINGTON -- The Senate has passed legislation to bar
insurance companies and employers from discriminating against people
based on genetic testing. People learning through genetic testing that
they might be susceptible to devastating diseases wouldn't also have to
worry about losing their jobs or their health insurance, under the
legislation. The 95-0 Senate vote sends the Genetic Information
Nondiscrimination Act back to the House, which could approve it early
next week. President Bush supports the legislation.
The bill, described by Sen. Edward Kennedy as "the
first major new civil rights bill of the new century," would bar health
insurance companies from using genetic information to set premiums or
determine enrollment eligibility. Similarly, employers could not use
genetic information in hiring, firing or promotion decisions.
"For the first time we act to prevent discrimination
before it has taken firm hold and that's why this legislation is unique
and groundbreaking," said Sen. Olympia Snowe (R., Maine), who sponsored
the Senate bill with Sens. Kennedy (D., Mass.), and Mike Enzi (R.,
Wyo.). There are more than 1,100 genetic tests available today, she
said, but these are "absolutely useless" if fear of discrimination
discourages people from taking tests or participating in clinical
trials.
Genetic testing could lead to early, lifesaving
therapy for a wide range of diseases with hereditary links such as
breast and prostate cancer, diabetes, heart disease and Parkinson's
disease.
"But right now the ability to realize those goals is
somewhat limited" because of patients' fears that the information will
be used against them, said David Herrington, a professor of cardiology
at Wake Forest University and spokesman on genetic issues for the
American Heart Association. The legislation "will help them both be
more willing to participate in research and avail themselves of the
benefits of genetic testing."
Copyright © 2008 Associated Press
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Giles Stone Creates MMD
Awareness and Continues
to Raise Research Funds in Harrisonburg, Va.
The Daily News Record reports of his
recent fundraisers at Outback Steakhouse and Pump It Up. Giles has
also developed a good relationship with SRI, a new biotechnology
company who has developed countless compounds to help with orphan
illnesses. Governor Kaine has been a big supporter and advocate of SRI
in Virginia. See article on our website, under news.
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The ONLY Clinical Trial for
MMD in the world is being conducted by a Richmond Company called Insmed.
A medicine called Iplex ,
has shown to help with some symptoms by building muscle and
improving cognitive functioning. It will be tested throughout the
United States at different hub locations. The above legislation helps
to improve the chances that people will participate without fear of
discrimination by their insurance companies. If you have MMD and would
like to consider participating see our Home Page under Iplex Study.
Edibell will be going to Johns Hopkins for a screening on May 23rd.
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During the holidays, Elliott and
Nicholas received a 2 pound puppy, named Ellie. I have
to say that Todd and I hesitated knowing the responsibility and care
that puppies need. I was scared, already feeling stressed & it went
against every logical bone in my body (There really aren't that
many,but still...). I chose the smallest dog, an Imperial Shih Tzu. She
is now at 5 lbs and will likely stay that size. To sum it up, she has
helped us laugh, and has brought great joy to our home. She is a great
cuddler but definitely has a wild side which is a lot of fun. Ellie has
no clue that she is so small as she is ready to take on any dog....and
in this way she mirrors our efforts. She is now sleeping next to
me probably dreaming of what is possible, with no regards to obstacles
and limited only by her imagination. Try this sometime, it works.
Good Night everyone. With sincere gratitude,
Edibell and Todd Stone
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