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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - March News
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24th Annual Chromosome 18 Conference
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year's conference taking place in Naperville, IL,
Wednesday, July 12th through Saturday, July 15th.
Everyone must pre-register online. There will be no on-site registration.
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You can book your room now
here
or call +1-630-505-4900 and be sure to let them know you'll be staying for the Chromosome 18 Conference.
For conference or registration questions, please contact the Regsitry office at
[email protected] or 210.657.4968
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We did it! We were able to secure the $10,000 matching contribution from our anonymous donor thanks to your participation and support of Chromosome 18 through Birdies for Charity, raising nearly $34,000 - Thank you!
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Official Fiesta Event
Starfish Dash - Run / Walk
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Come join us in The Chromosome 18 Registry & Research Society's
Starfish Dash - Run/Walk. It
is a great event for all ages and the entire family can participate. The course leads you through the UT Health campus. The official Fiesta event is FREE to all participants but we suggest fundraising / donations to participate. Strollers and wheelchairs are welcome but no pets are allowed on campus.
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A Health and Wellness Fair and Market Place will accompany the event. Lots of fun activities will be available at this very family-friendly event. T
he more funds we raise, the faster the research center can develop treatments to improve the lives of those affected by chromosome 18 conditions which include many cognitive and physical impairments. Click here
for details.
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New Executive Board Treasurer
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It's a great pleasure to announce that John Drymala has agreed to fill the Treasurer term as Denise Par
ker has been filling the position for an extended period of time until a new Treasurer could be found.
John works for Valero Energy and has been a long time golf participant. This is the first time that we've had an Executive Board member that has not had a family member with a chromosome 18 condition. John will be attending the annual conference this summer and looks forward to meeting many of the Chromosome 18 families.
Denise has been an extraordinary asset to the Executive Board and has done a fantastic job with her service in helping steer the Registry during transitional times and we thank her for this commitment and dedication.
To learn more about John, please stay tuned to the Board of Directors section of our website where you'll find his bio and picture shortly.
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Live Broadcasts - FACEBOOK LIVE
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 Want to check us out LIVE? We are now broadcasting our monthly live broadcasts via Facebook Live.
We have the goal of airing a live, 18-minute broadcast on the 18th of each month at 1800 / 6:00 p.m. CST (Are you seeing an 18 trend? ). We will have a variety of topics and presenters and would love your topic ideas and answer your topic questions.
What a great way to see and chat with our wonderful group of physicians, researchers and staff!
Our next live broadcast will be via
Facebook Live
on our public Facebook page Tuesday, April 18 at 18:00 (6:00 p.m.) CST.
Courtney Sebold, Genetic Counselor from the Chromosome 18 Clinical Research Center will be presenting (topic TBA).
Send us your topic and presenter suggestions here.
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| Team Run4Caroline |
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Current
George Dunham, along with friends and family of his daughter, Caroline have raised almost $24,000 over the last couple of years while participating in obstacle course races. This year they are tackling the Gol
iathon in Mullica Hill, NJ on June 3rd.
The Goliathon is a 3 mile run with 10-15 obstacles. Each obstacle has three ways to attack - easy, moderate and impossible. It's a fun run for all ages and fitness levels.
For more information or to join, email George at [email protected]. Can't join in but would like to sponsor Run4Caroline and support Chromosome 18? Donations are welcome here.
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Kathy & Hannah Borello are hosting an online Yankee Candle fundraiser. Of course, Yankee Candle offers candles but you can also shop for magazines, flameless candles, gourmet popcorn, car fresheners, gift wrap and more!
Please shop and share this
link
- 40% of every purchase is donated back to Chromosome 18. Last day to order online is May 31st.
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Liz Woodfield has teamed up with Flower Power for another year so that we can have a garden in bloom while raising money for Chromosome 18.
To order your flowers, vegetables, herbs and fruit seeds and bulbs, click
here
.
For every item you buy, Chromosome 18 receives 50% profit through May 1st.
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How Can You Help?
As you can see, it just takes a small amount of time, some ingenuity and heart and anyone can raise funds to help programs and research for Chromosome 18 Registry & Research Society.
Have a fundraiser to share? We'd love to help you get the word out!
Send us the details and we'll feature your fundraiser in our monthly newsletter and via our social media channels.
Want to host a fundraiser but not sure where to start?
Contact us for ideas.
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Chromosome 18 Clinical Research
Center Tours
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In the San Antonio area?
Come tour The Chromosome 18
Clinical Research Center!
On the second Thursday of the month, from 11:30 am to 12:30 pm, the Research Center will be opening its doors to registered participants who will meet the staff and researchers, learn what current studies the team is working on and experience a hands-on tour of the facilities.
Upcoming tour dates are
April 6 (moved up one week to meet scheduling demands),
May 11 & June 8.
For more information or to register for an upcoming tour, contact Neale Parker, Executive Director at
[email protected]
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Best Regards,
Leah Gransbery
Director of Operations
The Chromosome 18 Registry & Research Society
(210) 657-4968
gransberyl@chromosome18.org
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