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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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2018 Chromosome 18 Decoded:
25th Annual Family Conference - Book Now!
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The
25th Annual Chromosome 18 Annual Family Conference
is right around the corner! Join us in
Baltimore, Maryland
from
July 2 - 4
for three days of families coming together to share, discover, and build friendships to better understand chromosome 18 abnormalities. The conference ends with watching 4th of July Fireworks over the Baltimore Harbor - don't miss out and register today!
Many families say that attending the conference is a "life changing experience," and whether it is your first or twentieth time, we can't wait to see you there!
Everyone must pre-register online. There will be no on-site registration.
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REGISTRATION CLOSES JUNE 11, 2018
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With only
3 weeks left to register to attend this year's conference
, we can't wait to share all things conference with you! Read below to find out about Events Registration, VIP Table Sponsorship, Volunteer Opportunities, and more! View more information about the conference in our latest conference newsletter.
Events Registration:
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VIP Table Sponsorship:
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Don't worry - you still have time! Raise at least $1,500 and you'll be able to pick your choice of table that seats 10 in the ballroom for the Starfish Dinner & Dance and choose how you would like to be recognized by selecting your table name along with VIP reserved seating. Find out more
here!
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Volunteer Opportunities:
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Whether this is your first conference or you are a conference veteran,
we could use your help to make this year's conference our best one yet!
Sign-up to volunteer for a variety of activities over the course of the conference. From registration, photography, and merchandise to organizing the silent auction, there is something for everyone!
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Silent Auction Donations:
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We are now accepting Silent Auction donations! Simply
fill out the form online
to let us know what you are donating and then bring the item in-person or ship it to the conference - it's that easy!
Thank you to those who have already notified us of their generous silent auction donations! We are thrilled to feature your items at our silent auction on that last evening of the conference.
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Chromosome 18 Houston Starfish Scramble
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On Sunday, May 6, over 40 people attend the Starfish Scramble fundraiser at Topgolf in Katy, TX. Special thanks to our sponsors Audi West Houston and to Tam Aldrup, the Texas Regional Coordinator for all of her hard-work with making this event happen and a lot of fun.
Also, a huge thank you to Kristy Holder & Dave Aldrup who helped put this all together.
A big shout out as well for everyone who donated, volunteered, or help make this event very special! Because of your help, the Houston Starfish Scramble
raised a grand total of over $6,500
!
Interested in hosting your own Starfish Scramble? See if there is a Top Golf near you here. Contact office@chromosome18.org for more information!
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18 Fore 18 Golf Tournament
Starfish Scramble Series in Tulsa
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On Saturday, May 12,
Kyle & Holly Hubbell and their families hosted the 1
8 Fore 18 Golf Tournament at the
Hard Rock Casino Golf Course in Tulsa, OK
in memory of Jay T. Parker. Over 50 people attended the amazing event and enjoyed a beautiful day on the course celebrating the life of Jay T. Parker and raising awareness for Chromosome 18 conditions.
To learn more about the Hubbell's story and Jay T. Parker, click
here
.
Thank you to the Hubbell family, participants, and volunteers that helped to make this event a success.
Because of you, the event raised over $5,700!
Interested
in hosting your own Starfish Series Event? Click here to learn more!
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Chromosome 18 Clinical Research Center
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We were pleased to have representatives from the King Williams Book Club, Shauna Goodman from SA Works, and Ashley Brooks from Alamo Colleges at
the May Chromosome 18 Clinical Research Center Tour. Chromosome 18 will be partnering with SA Works to host two high school interns this summer and partners with Alamo Colleges to host community based work study staff members.
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This month,
Courtney Sebold
, Chromosome 18 Clinical Research Center's
Genetic Counselor
, published an article entitled,
Variants Among Variance
, which you can read in its entirety
here
. You can view past articles from Courtney on the Chromosome 18 website. If you have any suggestions or request for topics, please email the Chromosome 18 office.
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Courtney Sebold hosted this month's Chromsome 18
Facebook Live Broadcast on May 18. She discussed the activities the Chromosome 18 Clinical Research Center will host at the 2018 Annual Conference this year. If you missed it, you can watch
here now.
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2018 was one of the most successful years for our
Birdies for Charity fundraiser! With a record
2,904 birdies made during the tournament, your pledges and one-time gifts counted more than ever.
Thank you to everyone who donated - every penny counted toward helping us reach our goal and to making this one of our most successful years ever.
The results are in and you helped us raise over $40,000!
A special thank you to our matching donor
Silicon Valley Community Foundation for their generous matching donation of $20,000. Because of See what donations like yours help fund by viewing our
2017 Annual Report.
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Volunteer Spotlight: Kristy Holder
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Kristy Holder
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Kristy Holder serves as the Director of Marketing for Chromosome 18. Kristy has become an incredibly active member of Chromosome 18 since joining last year with her family, including her son Weston who has 18p-. Her fundraising efforts with Weston's World have helped to raise over $2,500 for the San Antonio Starfish Dash and the Houston Starfish Scramble.
You can learn more about Kristy, her family, and Weston's incredible story here! |
Weston, 18p-
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Chromosome 18 Europe's Bi-Annual Conference
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Chromosome 18 Europe's Bi-Annual Conference
will be held in Glasgow, Scotland from June 22-24, 2018. This would be a wonderful way to connect with other Chromosome 18 families in Europe. Staff from the Chromosome 18 Registry & Research Society will also be present at the
Europe
an conference.
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Thank You and Happy Birthday Raquel Sidestan, Shelly Bielser-Wiles, Brenda Smith Bahr Burnum, and Theresa Verstreater for celebrating their birthdays with Chromosome 18 by donating their special day on Facebook, raising funds and spreading the word about our great organization. Check out all the birthday celebrators here.
On June 30, the
Chromosome 18
Executive
Board
had lunch with the Chromosome 18 Office Staff. Thank you to both the Executive Board and the Staff or all of your support throughout the year. Read more about the lunch here.
On May 6, Texas Regional Coordinator,
Tam Aldrup, hosted a
Starfish Scramble Event at Topgolf in
Katy, TX raising over $6,500. Learn more about this wonderful event
here.
Chromosome 18 was honored to be joined by community partners at the May 10th Chromosome 18 Clinical Research Center Tour. Read more about the tour here.
Families in the
Houston, TX area enjoyed an afternoon at the
Houston's Children Museum on Sunday, May 20 at an event organized by Texas Area Regional Coordinator, Tam Aldrup.
Dr. Jannine Cody was honored at the San Antonio Business Journal's
2018 Health Care Heroes Awards on May 24. Read more about Dr. Cody's award
here.
The
second Starfish Crawl took place in San Antonio, Texas on May 26. Read more about the event
here.
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If you missed our Chromosome 18 Live Facebook Broadcast presented by Genetic Counselor, Courtney Sebold, you can view it here.
Be sure to tune in to the June Facebook Live Event, June 18th at 1800 (6:00 p.m. CST), hosted by Self-Advocate, Devon Lacey, on Facebook.
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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.
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Jackson Family, Rocky Mountain Region, 18q-
Moore Winter Family, International, 18p-
Pecorelli Family, Canada
Dennis Family, Rocky Mountain Region
Roberts Family, Southeast Region, 18q-
Romko Family, Mid-Atlantic Region
dos Passos de Oliveira Family, International, 18q-
Kumar Family, International, 18q-
Allred Family, Southwest Region, 18p-
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Ruiz Family, Rocky Mountain Region, Trisomy 18
Roberts Family, Southeast Region, 18q-
Silva Family, International
Nvarrete Family, International
Houle Family, Mid-Atlantic Region, Tetrasomy 18p
Dos Santos Moreira, International, 18p-
Coggan, International, Tetrasomy 18p
Blagborough, International, 18p-
Wharton, International
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June 5 - July 15 - Positive Exposure NY Exhibition: Redefining Beauty - Maroochydore, Queensland, Australia. Contact admin@chromosome18.org.au for more information.
June 7
-
Chromosome 18 Clinical Research Center Tour
- San Antonio - 11:30 a.m. to 12:30 p.m. Contact
office@chromosome18.org
for more information
[Postponed] June 16 - Luau - Southeast Regional Event - Due to unforeseen circumstances, this event has been postponed until further notice. Please contact
office@chromosome18.org for more information.
August 5 - C18 Great Lakes Regional Picnic - Fort Wayne, Indiana. Contact Melanie Gorrell or
office@chromosome18.org for more information.
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Do you have questions, or would you like more information about something in this newsletter? Contact
office@chromosome18.org
for more information.
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