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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - July News
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2018 Chromosome 18 Decoded:
25th Annual Conference
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Chromosome 18 Decoded
, our 25th Annual Conference, was celebrated from July 2-4, 2018. This very special anniversary conference took place at the Rennaissance Baltimore Harborplace Hotel in Baltimore, Maryland. A huge thank you to Nichole McVicker, our conference chair, and our 2018 conference committee and volunteers who committed their time to making this conference a memorable experience for all the attendees. Over 360 people attended, including 20 first time families! We thank the amazing dedication of everybody that donated their time to give the attendees such a high quality of experience at a primarily volunteer organized conference.
The fun didn't end at 5:00 PM, as every evening had a different activity including
Self-Advocates Night
,
Sibling's Night
,
Ladies Night
,
and
Men's Night
. Everyone had a wonderful time, and lots of new friendships were made. Our final night had a packed ballroom for the Starfish Dinner & Dance. This night didn’t disappoint with a full dance floor with everybody joining in the fun for hours before the fireworks for the 4th July holiday. This year, we had 13
VIP Table Sponsors
that helped raise nearly $25,000 for Chromosome 18. Thanks to everybody who made donations to the auctions
and over $10,600 was raised for Chromosome 18! Now we are looking forward to the 26th Annual Conference that will be held July 22-29th 2019 in Colorado Springs!
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Chromosome 18 Clinical Research Center
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We were please to have a full house at our
July Chromosome 18 Clinical Research Center Tour
.
UTSA Rowdy Corps Program Coordinator, Steven Maldonado, interns from SA Works & the City of San Antonio Ambassador Program, and their families were win attendance. Thank you to the Chromosome 18 Clinical Research Center team for hosting us at your July tour!
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Dr. Jannine Cody
was honored at the
Health Cell's State of the Industry
event in
February 2018
in San Antonio, TX. In her speech, Dr. Cody explains the importance of the work at both the Chromosome 18 Registry & Research Society and the Chromosome 18 Clinical Research Center.
Watch her speech now
.
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As a 501(c)(3) non-profit, Chromosome 18 is primarily funded through donations of our members. While we are constantly striving to find additional sources of funding through community partners and grants, the reality is that the Chromosome 18 Registry & Research Society exists because of you!
Chromosome 18 directly funds the Chromosome 18 Clinical Research Center, and all of the resources that we are able to provide to you from the Chromosome 18 Clinical Research are due to this support. In an effort to be completely transparent, we wanted to share the most up to date information about Chromosome 18's financial information with you. You can find our most recent tax documents
here
.
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- Chromosome 18 Clinical Research Center owes UT Health: -$60,043.68
- Chromosome 18 has only paid the Chromosome 18 CRC $75,000 out of the $320,000 that we have promised. We have $245,000 still to go in the next five months.
- At $320,000 this only employees most C18 CRC staff on a part time basis, so only a percentage of their time is spend on Chromosome 18 Research.
- We need to fund the C18 CRC at a $500,000 level per year to have all the staff working on Chromosome 18 Research full time
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There are so many ways that you can help whether it is through a monthly donation, a one-time gift, a fundraiser, volunteering, or spreading awareness with your friends and family, you're support makes a difference!
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Volunteer Spotlight: Nicole McVicker
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This summer, I had the amazing opportunity to host Chromosome 18 Decoded, our annual family conference. I have been a member of the Registry since 2008 and always loved seeing everyone’s conference photos on Facebook each summer but never had the opportunity to go until Salt Lake City in 2015. I attended that conference as a staff member, as I was serving as the Registry’s Director of Operations at the time. After being at the conference for less than 24 hours I was already kicking myself for not having made the commitment to attend in the past. The following two conferences (San Antonio and Naperville) I attended with my unaffected daughter, as my affected son Graydon does not travel well. She loved the conferences but longed to have her brother there like the other kids. I knew that the only way this would ever happen is if I hosted a conference in Baltimore. Don’t get me wrong, hosting a conference is a lot of work, but it is also very rewarding. Looking around at everyone having fun, reuniting with friends I only get to see once a year, and most importantly, watching the rest of my family have their first conference experience, was something I will cherish for a long time to come. The Registry was there for my family when so many could not offer us any explanation or information about Graydon’s condition and hosting a conference was my way of saying “thank you!” If you have never attended a conference, I highly suggest making the commitment. And believe me, I know that it can be a big commitment both in time and money. But the friends you make become family and that’s just priceless!
Read more about Nichole and her family
here
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Chromosome 18 Online Shop
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The wait is over! The Chromosome 18 Online Shop is open! Visit today and find t-shirts, polos, blankets, cookbooks, and all of your favorite Chromosome 18 merchandise.
100% of the proceeds from purchases directly support the Chromosome 18 Registry & Research Society and the Chromosome 18 Clinical Research Center. Shop today to treat yourself to a new Chromosome 18 t-shirt or buy a thoughtful gift for a loved one, and support Chromosome 18!
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Work Study Staff Promoted to Supervisor Positions
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Announcement of Promotion
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Agnes Espericueta, Andrea Davila, and Victoria Ochoa
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Agnes Espericueta
,
Victoria Ochoa
, and
Andrea Davila
come to Chromosome 18 from the Alamo Colleges Work Experience Program. These three work study staff members have been with Chromosome 18 for a year and have taken on an incredible amount of responsibility within the office, including helping to supervise our five summer interns. Because of this, we recognized them with a promotion from Assistant to Supervisor positions. Congratulations to our new Administrative Supervisor, Agnes, Social Media & Marketing Supervisor, Andrea, and Accounts Supervisor, Victoria!
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Thank You and Happy Birthday
to
Annice Hill, Amanda Lee, Christa Glavan, Kelly Saunders, Briana Turner, and Hali Graeff
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 celebrations
here
.
The Chromosome 18 office would like to welcome our
five summer interns
from both
SA Works
and the
City Ambassador Program
who have been a huge help. Learn more about our summer interns
here
.
Thank you to everyone who donated during the
Birdies for Charity Fundraiser
, during the month of April. On
June 29
, Neale Parker accepted a check from the
Valero Energy Foundation
for
$42,000
. Read more about this incredible story
here
.
Chromosome 18 Decoded
, Chromosome 18's Annual Conference, was held in
Baltimore, MD
from
July 2-4
. Learn more about this exciting event
here
.
On July 2 & July 3,
Men's & Ladies' Night
were held at the
James Joyce Irish Pub
during Chromosome 18 Decoded. Click
here
to see pictures and learn more about the event!
On July 2 & July 3,
Sibling's
&
Self Advocates Night
were held at
Philip's Seafood
during Chromosome 18 Decoded. Click on the above links to see pictures and learn more about the events!
Thank you to everyone who donated to our
Silent Auction
and participated during the
Live Auction
that took place during the conference from
July 3 - 4.
Learn more about the events
here
.
Thank you to our
VIP Table Sponsors
at the Starfish Dinner & Dance during Chromosome 18 Decoded, Chromosome 18's Annual Conference on Wednesday, July 4. Together,
VIP Table Sponsors raised over $24,000
! Learn more about our sponsors
here
.
Positive Exposure Exhibition: Redefining Beauty
was being featured from
June 5 - July 15
in Maroochydore, Queensland, Australia with our affiliate organization Chromosome 18 Australasia. Click
here
for more information.
On
July 12
, we were joined by community partners for our monthly
Chromosome 18 Clinical Research Center Tou
r in San Antonio. See Upcoming Calendar Events for next month's tour date. Read more about the tour
here
.
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Stacy Gallardo
, Director of Social Media for Chromosome 18, hosted our
July Facebook Live Event
. Stacey discussed various items from the conference as well as the financial state of Chromosome 18. View Stacey's video
here
!
Be sure to tune in to the
August Facebook Live Event
, August 18th at 1800 (6:00 p.m. CST).
Our next Facebook Live host is TBD
. Contact the office if you are interested in hosting!
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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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Sánchez Family, Colombia
Hayes Family, Canada, Pitt Hopkins
Michael Family, Southwest, 18q-
Charles Family, Austrailia
Cross Family, Southwest, 18p-
De Wet Family, South Africa
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Kirbawy Family, Northwest
Sawardekar Family, Texas Area, 18p-
Clermont Family, Mid-Atlantic
Kumar Family, India, 18p-
Taylor Family, Southeast, 18p-
Medcalf Family, Northeast, 18q-
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Upcoming Calendar Events
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August 19
-
Starfish Splash -
National. Contact the Chromosome 18 office at
office@chromosome18.org
for more information.
September 1
-
Northeast Regional Get Together -
Contact
Kim
&
Dave Stoddard
for more information.
November 3
-
San Antonio Phantom Wine
, San Antonio, Texas - Contact
Neale Parker
at
parkern@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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