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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - December News
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As we say goodbye to 2017 and welcome 2018, take a moment to reflect on our accomplishments over the past year -
all thanks to our wonderful members, donors, volunteers, community partners and corporate sponsors. Full story
here.
There are a few more days left for end-of-year giving. Please consider
donating to Chromosome 18 - we would be honored to receive your monetary or stock donations.
All donations receive a donation letter for your tax records.
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Chromosome 18 Clinical Research Center
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In preparation for year's end, the Chromosome 18 Clinical Research Center Annual Report was sent to all the families who are participating in the research. It includes accomplishments from this last year as well as our wish list of projects we need funding for. Dr. Cody is finish up the annual literature review of all the genes on chromosome 18. This will update the chromosome 18 map of all the genes that have an effect when you have an abnormal number of copies of that gene. It help us define future directions as we hone in on the key genes. It also helps to define the potential consequences on any one person's deletion or duplication.
Courtney Sebold, Chromosome 18 Clinical Research Center's Genetic Counselor, delivered a new article, "Gene AFG3L2: Asking the Right Question",
which
highlights the importance of collaboration as we continue to research t
he effects of missing or extra pieces of chromosomes.
See full article
here
.
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To operate at capacity the Chromosome 18 Clinical Research Center needs $500,000 in funding. We are pleased to announce that
$320,000 in 2017 was provided as a donation from Chromosome 18 Registry & Research Society to help build on the ground breaking Research for our Chromosome 18 families! This was is an increase of about 19% from 2016 but still short of our goal to fund the Research Center at 100%.
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Jannine & Elizabeth Cody, Emi Behan & Neale Parker attended the UT Health
Division of Endocrinology and Genetics Holiday Party held at Southtown Pizzeria and all the Chromosome 18 Clinical Research Center was invited. It was a fun event and a once yearly opportunity to all get together.
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Molly Feagin
, the mother of
Vivian
, has raised over
$7,500
so far! Check out more
here
.
Victoria Lopez raised $200 selling cupcakes at her university. Way to go, Victoria! Check out this sweet story here.
2018 Chromosome 18 Conference Chair, Nichole McVicker, presented during December's Live Facebook Broadcast that airs on the 18th of each month at 1800 CST (6:00p.m. CST). Check out the video and see what to expect at the upcoming Chromosome 18 Annual Conference in Baltimore Maryland, July 2-4! More conference details will be announced mid January!
Giving Tuesday
, a celebratory day of giving, the Tuesday after Thanksgiving was a great success! A huge thank you to
Erica Freund, Liz Woodfield, Cristi Cain, Tam Aldrup, Ann McLauchlan, and Deborah Cox,
who started fundraisers on Facebook on behalf of Chromosome 18. Thanks for everyone who contributed - a total of almost
$2,500
was raised! Pictures and complete story
here
.
Thank you to
Grande Communications in Austin, TX for their
$500 Grande Community Chest grant to Chromosome 18! Staff from Grande Communications decides which worthy charity receives the grant, and we are excited that they chose us! Thank you to
Bernice for coming to our office to present the check (pictured right with Emi Behan).
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Our tree is adorned with the beautiful Chromosome 18 ornament from the Stoddard Family's Holiday Ornament Fundraiser. Thank you again to Dave, Kim & Jenna for your wonderful creation and dedication to Chromosome 18! |
Chromosome 18 held their
Holiday Celebration
at Oak Hills Lanes, bowling with staff, work experience participants and spouses.
Pictures and details of the event can be found
here
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Chromosome 18 Starfish Dash was represented during the San Antonio Rock 'n'Roll Marathon, on December 2nd & 3rd. Thank you to all of the participants but particularly to Marisol Garcia & Jeff Pompeo for such a wonderful job with teams and fundraising! Must see pictures & story here.
Our very own 18q- Syndrome Coordinator, Katie Schilly, invited her friends and family to enjoy a cup of tea in the comfort of their own home on December 3rd and raised nearly $1,000 in the process! More details here.
Congratulations to Chromosome 18 Member and Self Advocate, Camilla Downs (16 y.o.), the proud, new author of Where Would You Fly and Other Magical Stories. More information and pre-orders can be found here.
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Help Us - To Help You
We want to hear from you! - What type of events are you interested in seeing or attending in your area? Please take this quick
4 question survey to let us know.
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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.
We encourage people around the country to organize your own
Starfish Series event, like a Starfish Scramble at your local Topgolf where everything you need has already been negotiated for you.
Chromosome 18
Starfish Series
events are not limited to golf. Our unique series offers other popular and fun opportunities such as bowling, quilting, running, walking, swimming and tennis to raise awareness and funds for Chromosome 18. Starfish Series Fundraisers can be held once or as an annual fundraising opportunity that builds on the previous year's success. Our hope is to develop a unique brand for Chromosome 18 in which everyone can participate, regardless of location,
to help raise funds, awareness, and be part of an enjoyable and fun event.
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Welcome to the Chromosome 18 Family
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We are delighted to welcome the following families to Chromosome 18.
Barquero Family, Texas Area, 18p-
Craig Family, Mid-Atlantic, 18p-
Fazenda Family, International
Gehirnger Family, South Central, 18p-
Hansen Family, Texas Area, 18q-
Hawkins Family, Rocky Mountain, 18q-
Hilarczyk Family, Mid-Atlantic, Trisomy 18
Holder Family, Texas Area 18p-
Ireland Family, Northwest Family, 18p-
Lagourgue Family, International
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Linman Family, Southeast
Mann Family, Mid-Atlantic, Trisomy 18
Passerini Family, International, 18q-
Radojevic Family, South Central, Trisomy 18
Roe Family, Great Plains, 18q-
Rowell Family, International, Pitt Hopkins
Saavedra Family, Southwest, Ring 18
Watson Family, Texas Area, 18q-
Spata Family, International, 18p-
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We are looking for members to help serve on our
Chromosome 18 Grant Committee which will be headed by
Kathy Borello. If you would like to help with the planning, preparing and submitting of corporate, foundation and individual grants, please contact the office,
office@chromosome18.org or (210)657-4968
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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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