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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - June News
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24th Annual Chromosome 18 Conference
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Chromosome 18 & Annual Conference Merchandise
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You can
pre-order your merchandise online and pick-up your order when you arrive in Naperville. Or order online and have it shipped directly to you! All shipping fees are set by our supplier and are unable to be waived. Direct ship orders may be delivered after the conference. Limited quantities and sizes will be available at the conference, so we encourage you to order in advance.
Not attending the conference? No problem! Order online and the merchandise will be delivered to you after the conference for a small shipping fee.
All merchandise sale proceeds go directly to the Registry.
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Starfish Dinner & Dance VIP Reserved Table Sponsorship
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Have you been thinking about sponsoring a VIP reserved table for the Starfish Dinner and Dance? 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.
Click
here
for more information on this special fundraiser!
Not attending the conference, but still want to participate?
Raise at least $1,500 and be recognized with a table in your name!
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Conference Registration and Details
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We are pleased to announce that this year's keynote speaker will be Chris Ulmer! To learn more about Chris, check out his full
bio. Our special guest for the Starfish Diner & Dance will be Eugenia Cheng
bio
John McGing, who will be presenting "SSI and SSDI" at this year's conference has some information to share on how this year's session will have a modified format to ensure the best use of everyone's time. See John's full letter to conference attendees
here. Check out the full conference
schedule for planned sessions and activities.
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Warm Welcomes & Fond Farewells
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We are very disappointed to announce that Leah Gransbery, our Director of Operations, has had to take care of some family matters that will take her out of state. The whole Registry would like to thank Leah for the last year in which she has made some amazing accomplishments and helped transform the office in San Antonio into an efficient operation. We will see Leah helping out at this year's annual conference and wish her the very best for the future.
The Chromosome 18 Registry would like to welcome Emi Behan our new Office Manager, Lauren Conrad, our new grant intern from UTSA, and Destiny Haper, our summer intern.
After four years as an elementary school teacher, Emi decided to follow her passion for service and operations and joined the Chromosome 18 Registry and Research Society as an office manager. She is looking
forward to working to help increase awareness and provide support for friends, families, and self-advocates affected by Chromosome 18 conditions. Welcome, Emi!
Lauren Coronado is joining us from UTSA and will be working 150 hours for us over the next few months to help develop a system for tracking grant applications, finding grants, and writing grants. We are excited to have Lauren join the team!
Destiny Harper will be joining the Chromosome 18 team this summer for 120 hours as part Family Service Association of San Antonio Inc.'s Youth Education Department's Youth College & Career Opportunities Program. As the newest addition to the office, Destiny will help us prepare of the 24th Chromosome 18 Annual Conference, digitize records, and take on administrative tasks. Welcome aboard, Destiny!
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If you haven't joined our new
messaging
platform,
RYVER
, yet you may be missing out on important syndrome discussions.
RYVER allows our members to engage in communications with other members and Chromosome 18 coordinators. Through RYVER, members can exchange messages, ask questions, share pictures and more. This wonderful benefit is available,
FREE
to Chromosome 18 Registry members only.
In order to be approved to participate in the forums, you will need to be a Chromosome 18 Registry member and your user name must be your first and last name. The following Syndrome Forums (Ring 18, Tetrasomy 18p, Trisomy 18, 18p- and 18q-) are now
LIVE. Check them out and post your pictures, questions and insight and create some discussion!
To enroll in this wonderful,
FREE service, click
here.
RYVER is available for app download for your desktop on your
Windows
or
Mac
as well as your
Android
and
Apple
devices.
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Important Dates & Happenings
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August 12th
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Northwest Regional Picnic - Ringoes, NJ - Contact
Liz Woodfield
for more information.
August 22nd - Chromosome 18 Clinical Research Center - 26th Anniversary - San Antonio, TX - Contact
Neale Parker for more information.
September 21st - 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 - 7:30p - Contact Neale Parker for more information.
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Past Events
On Saturday, June 10th Shelley Hunt hosted the annual Ontario BBQ at her home. She had 12 families attend coming from all over southern Ontario and the Earl Family from Kalamazoo Michigan. A fun day for all and a chance to connect and catch up. Looking forward to getting together in the fall.
Dave, Kim and Jenna Stoddard were on a local radio station for the Hasbro Children's Hospital Radiothon. The annual fundraiser featured the Stoddard family on the radio station where they were able to tell Jenna's story and talk about the Registry.
The Registry's Executive Director, Neale Parker, made a presentation of all things Chromosome 18 to the attentive group of the Mission Rotary Breakfast Club in San Antonio, TX on June 13th.
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Gabby Dhanraj, Alexander Dhanraj & John Platt
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Nine-year-olds
Alexander Dhanraj and best friend
John Platt decided to open their own fundraising stand after participating in (and enjoying) charity work at school. Their watermelon stand featured $1.00 watermelon slices and all proceeds went directly to the charity of their choice - The Chromosome 18 Registry & Research Society, an easy choice for Alexander as he wanted to honor his seven-year-old sister,
G
abriella (Gabby) Dhanraj (18p-). Thanks to the efforts of Alexander and John, they raised $75 for the Registry!
George Dunham and the Run4Caroline team raised $5,355.00 for the Registry! Thank you Dunham family and supporters for this amazing fundraising total.
Kathy & Hannah Borello's Yankee Candle Fundraiser raised nearly $250 for the Registry! Thank you Borello family and all those who ordered to help raise funds for our organization.
Les & Annemarie Weatherhead organized a fundraiser at Airbus Industries that included wearing jeans to work and selling off some office furniture. Their efforts raised over $2000 for the Registry! Thank you Les & Annemarie and Airbus Industries.
Nichole McVicker's LipSense/SeneGense Fundraiser raised
$200
for the Registry! Thank you Nichole and all those who ordered to help raise funds for Chromosome 18.
Liz Woodfield's Flower Power Fundraiser raised $111 for the Registry! Thank you Liz and all those who ordered through this wonderful, annual fundraiser.
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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
July 20th (adjusted due to annual conference), August 10 & September 14.
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For more information or to register for an upcoming tour,
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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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