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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - August News
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Clinical Research Center Updates
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The Chromosome 18 Registry & Research Society recently awarded the Chromosome 18 Clinical Research Center $100,000 to further their momentous achievements in chromosome 18 research. However, the Registry's responsibility to ensure the Research Center's continued efforts to make chromosome 18 the first treatable chromosome abnormalities is behind the proposed commitment level. You can help by pledging your support with a
one-time or monthly contribution,
holding a fundraiser, and/or by including Chromosome 18 Registry & Research Society in your
legacy planning.
Want to learn some interesting facts about the Chromosome 18 Clinical Research Center?
Destiny Harper, our summer intern, has put together a wonderful presentation that highlights the center, it's hard-working and dedicated staff and the world-renowned research on all things chromosome 18.
Recently, the Chromosome 18 Clinical Research Center released
Management Guidelines for many of the chromosome 18 conditions, including proximal and distal 18q-, 18p-, tetrasomy 18p, and ring 18.
These guidelines are intended to be used by physicians and represent the culmination of several decades of research and our current understanding of these conditions. These guidelines are unique in that they are designed to give information specific to an individual's deletion. To develop the guidelines, we reviewed the literature as well as our own database to determine which concerns are most likely to present as well as the most appropriate method to screen for that issue.
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A special thank you to our
Chromosome 18 Champions
, those that commit to support the Registry with a monthly donation (see right).
We appreciate your continued and steadfast support of our organization.
Setting up a monthly donation is fast, easy, tax-deductible and ensures the procurement of valuable chromosome 18 research by helping to better plan our budget.
Click
here
to set up your monthly donation, select monthly and your desired amount.
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Shelby Griffin (since August 2017)
Michael Fudala (since August 2017)
Katharine Sprister (since June 2017)
Lorna Feijoo (since March 2017)
Sergio Arce (since March 2017)
Dalton Guthrie (since March 2017)
Casey Baker (since December 2016)
Eileen Hossenloop (since November 2016)
Craig & Michelle Pessetto (since October 2016)
Patricia Lacey (since September 2016)
Erin Harlan (since September 2016)
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Please join us in congratulating
Liz Woodfield who has moved from the Mid-Atlantic Regional Coordinator to the new volunteer position - Director of Marketing and
Michael (Mike) Fudala who is the now new Mid-Atlantic Regional Coordinator.
Thank you to Liz and Mike for your dedication to the Registry - we're very grateful to have you on our team!
Thank you to our summer interns, Destiny Harper and Lauren Coronado for your superb work over the summer months. Your dedication and positive energy in the office were appreciated and will be missed. Best of luck to you both in your studies and future endeavors.
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Registry Volunteers Needed
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Looking to give back to the Registry? We are looking for volunteers to help the Registry build on our successes and grow into a recognizable organization across the nation in order to touch the lives of all those affected by chromosome 18 conditions. Want to raise your hand? Great! Just contact our office and we'll discuss our open board and committee positions (listed below) so you can see where your talents best fit. Call
(210) 657-4968
or email
office@chromosome18.org
today - You Can Make a Difference!!
- Director of Individual Relations
- Director of Corporate Relations
- Director of Foundations
- Committee members for 25th Annual Chromosome 18 Conference - Baltimore, MD, July 2-4, 2018
- Committee members for 2nd Starfish Dash -San Antonio, TX, April 28, 2018
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Facebook Live Presenters Wanted
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We are looking for
Chromosome 18 Self Advocates and Siblings
to host a Chromosome 18 Facebook Live event.
Facebook Live
events are held on our
public Facebook page
on the 18th of each month at 18:00 (6:00 p.m.) CST. Tell your story, inspire or teach our audience - you'll be reaching not just our members, but the whole world! Just have
18
questions that you can use, answer and practice before the live event.
Contact
the Registry office for more information.
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A huge shout out to Amelia Gallardo for raising $30,000 for the Registry by selling a goat. Wait...What? Check out this video for the amazing story.
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The Gallardo Family ( Rich, Sophia, Amelia and Stacey)
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Thank you to the Dave and Kim Stoddard for hosting another successful fundraiser - Christmas in July - where all proceeds of book sales, The Christmas Pumpkin, read by Santa helped raise funds for the Registry, "the charity that helps support Jenna's Rare Designer Genes".
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Jenna Stoddard with Mr. & Mrs. Claus
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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?
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Annual Conference Survey Winner
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Thank you to all conference participants that filled out the end-of-conference survey to give your review of the 24th Annual Chromosome 18 Conference that was held this July in
Naperville, IL.
We appreciate and value your feedback!
Survey assessments help guide the Registry and hotel staff to ensure future conferences are informative, functional and fun!
We are pleased to announce that Gayle Shaffer, first-time conference attendee, was the randomly-chosen winner of our survey contest. Gayle won a Chromosome 18 Registry & Research Society t-shirt and hat. Congratulations, Gayle and thank you again to all those who submitted their survey responses.
Mark your calendars for next year's conference - our 25th Annual Chromosome 18 Conference in Baltimore, MD from July 2-4, 2018.
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Important Dates & Happenings
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September 14th
-
Chromosome 18 Clinical Research Center Tour - San Antonio, TX - 11:30a - 12:30p -
Contact
Neale Parker
for more information.
September 14th
- Chromosome 18 Clinical Research Center Tour - San Antonio, TX - Contact Neale Parker for more information.
September 17th
- Northwest Regional Fundraiser - Starfish Dash (Philadelphia - Rock n Roll) - Contact Liz Woodfield for more information.
September 20th
- Texas Young Professionals Network Mixer - Chromosome 18 will be the evening's featured non-profit - Ruth's Chris at the Concord Plaza - San Antonio, TX - 5:30p - 8:00p -
office@chromosome18.org for more information -
$10 per person
October 12th - Chromosome 18 Clinical Research Center Tour - San Antonio, TX - Contact Neale Parker for more information.
October 14th
- Rocky Mountain Regional Fundraiser - Starfish Dash (Denver - Rock n Roll) - Contact Angie Moss for more information.
October 18th - Facebook Live - 18:00 (6:00 p.m.) CST - Chromosome 18 Facebook
October 25th - Starfish Scramble - Top Golf San Antonio, San Antonio, TX - 6:00 - 8:00 p.m. - Contact office@chromosome18.org for more information.
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Warm Regards,
Neale Parker
Executive Director
The Chromosome 18 Registry & Research Society
(210) 657-4968
parkern@chromosome18.org
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