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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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Starfish Dash 5K Run / Walk
A FREE, Virtual, Global Event!
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Join us from October 17-18 for the Chromosome 18 Virtual Starfish Dash Run/Walk! While we normally celebrate the Starfish Dash in April as an official Fiesta San Antonio event, due to current health recommendations, we are celebrating virtually in October! This is a great opportunity to connect with our families around the world!
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Watch the short, 1-minute video message from Chromosome 18 Parent and Starfish Dash Spokesperson, Marisol Garcia, where she shares why she is so excited about this upcoming event!
Chromosome 18's Virtual Starfish Dash Run / Walk brings our global community of chromosome 18 families & supporters together! Families representing Africa, Oceania, Asia, Europe, and North & South America will be participating to raise awareness about chromosome 18 conditions.
Join at your own pace in a safe location of your choosing. Whether you join us on the treadmill, a trail, the park, the beach, or just around your neighborhood, you will be joining hundreds of families around the world. Get involved, share your progress, and be part of our international community.
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- Virtual Starfish Dash
- Chromosome 18 Board Positions
- Chromosome 18 Clinical Research Center Updates
- Chromosome 18 Financials
- Virtual Member Connection Events
- Coordinator Corner
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- 2020 GreatNonprofits Award
- Chromosome 18 Legacy Society
- Member Information Updates
- Ongoing & Past Events
- Welcome New Families!
- Upcoming Events
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Chromosome 18 Volunteer Board of Directors:
Open Positions
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Do you want to get more involved? Serve on the Chromosome 18 Board of Directors! Thank you to all of our current Board of Director Members, and we hope that you would like to continue in your role! We truly appreciate all of your hard work. If you are interested in continuing in your role, please nominate yourself for the position! The following positions are open for nominations or self-nominations to serve terms beginning on January 1, 2021:
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Open Board Positions:
(3 year term)
VP of Member Relations
Secretary
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Director at Large Positions:
(2 or 3 year term)
Any skill set that would be valuable to Chromosome 18.
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Nominations will be accepted until October 18, 2020. These positions will be open for election, and anyone, including current board members, can apply. A nominee may run for two positions, but can only hold one position, so that person would have to choose which position they would wish to hold. Please direct your questions, inquiries, nominations and self-nominations to [email protected].
Director at Large Positions are open to any professional that has a skill set that may be useful to Chromosome 18. Positions are open for, but not limited to, attorneys, accountants, technological experts, and more. For more information, please contact [email protected].
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Chromosome 18 Clinical Research Center |
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This month, the Chromosome 18 Clinical Research Center shared an article & short video on the Gene Dosage Map (Part 2), which you can watch in its entirety by following the link. You can view the first part in the series by clicking Gene Dosage Map (Part 1).
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Sign-Up Today: September Live Virtual Tour |
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Want to attend a live tour? Do you have questions about the Chromosome 18 Clinical Research Center? Save the date for 11:30 am CDT on September 17, and join us for our monthly tour. We can't wait to show you around and answer your questions. For more information email [email protected] or register by clicking here.
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THANK YOU to everyone who participated in The Power of 18! Whether you set-up a fundraising page, donated, shared the link with friends and family, or cheered us on through social media, you helped raise over $61,000 - 61% of our goal! The Power of 18 ends today, so please take a moment to submit any last minute donations.
We also wanted to share a huge THANK YOU to everyone who gave after reading the letter from Chromosome 18's Volunteer Board of Directors last month. Gifts came from new families, community partners, and long-time supporters to help us make up the gap in funding we have experienced due to COVID-19. With your help, we raised nearly $44,000!
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September Member
Virtual Connection Events
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September 9th Presentation by Cristi Cain on the topic of Seizures: Join member Cristi Cain, who serves as our Tetrasomy 18p Coordinator, as she shares the journey her family has had with son Hardy's seizures. She will be available for Q&A at the end. Register here for this event.
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September 17th Clinical Research Center Tour: Want to attend a live tour? Do you have questions about the Chromosome 18 Clinical Research Center in San Antonio, Texas? Please join us for our monthly tour. We can't wait to show you around and answer your questions. Register here for this event.
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September 18th Facebook Live: This month will feature Self-Advocate Coordinator Racine Ghiz. She will be addressing our Self-Advocate community as well as talking about the upcoming Club 18 event (see next event in this list). No registration necessary for Facebook Live, just click here to join Racine on the public Facebook page at the time of the event or to see the recording later.
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September 28 Club 18 Event: "What I Can Do." This is a call just for Self-Advocates! Our Self-Advocates are automatic members of Club 18, and this event will be especially for them. We invite Self-Advocates to bring an item they made or a talent they can share. Register here for this event.
Contact Michelle Dvorak [email protected] for more information on these events, to volunteer to help coordinate online events, or to submit ideas for future online events!
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Happy September, Everyone! Are you finding yourself stressed out about back to school? Do you send kids to school, keep kids home, do a part time thing, or just all hibernate as a family until COVID is gone? I know as a parent and educator, my brain is on overload, and I feel there is no one right answer. But what I do know is that when I need a great supportive sounding board, my Chromosome 18 Facebook pages are where I can turn.
Did you know that Chromosome 18 runs several pages to fit all of our needs? We have our public page that anyone can join. This is great to share with others about our organization, events and our mission. This is a great page, but the real connections for caregivers are happening on our private pages. Chromosome 18 strives to provide platforms that create a safe place for families to connect. See the pages below:
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Please click here for step by step instructions about notifications from Jessica Robold, our Southwest Coordinator, so you NEVER miss a post!
-Katie Bailey, VP of Member Relations
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2020 GreatNonprofits Award |
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Chromosome 18 been named a “2020 Top-Rated Nonprofit” by GreatNonprofits, the leading provider of user reviews of charities and nonprofits. The Top-Rated Nonprofit Award is based on the rating and number of reviews that Chromosome 18 received from volunteers, donors, and Chromosome 18 families.
“Chromosome 18 is a great example of a nonprofit making a real difference in their community,” said Perla Ni, CEO of GreatNonprofits, “Their award is well-deserved recognition not only of their work, but the tremendous support they receive, as shown by the many outstanding reviews they have received from people who have direct experience working with Chromosome 18.”
Thank you to our families, donors, volunteers, and community partners who made this award possible. Awards like this help Chromosome 18 seek and acquire grant funding to help support our programs & services. Leave your own review on GreatNonprofits today by clicking here.
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Chromosome 18 Legacy Society |
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Since 1990, planned gifts have been integral to ensuring a bright future for our Chromosome 18 families. The Chromosome 18 Registry & Research is proud to announce the formation of our new Legacy Society that fosters a culture of giving to recognize and thank planned-gift donors.
The Power of a Planned Gift
The benefits of a planned gift to Chromosome 18 are immeasurable by enabling you to support Chromosome 18 and strengthen our mission. Planned gifts can provide material benefits to you — benefits such as lifelong payments, charitable tax deductions, and more. Learn more about legacy gifts here.
What are the benefits of joining the Legacy Society?
Being a member of the Legacy Society gives you the opportunity to belong to a select group of like-minded people who are committed to support the needs of our families. The Chromosome 18 Legacy Society recognizes its members at our Annual Conference, in our Annual Report, and will keep them informed about the organization through regular communication. Steps to planning your gift include:
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Establish – Donors can include a gift to Chromosome 18 in their will or trust, establishing a bequest.
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Notify – Donors notify Chromosome 18 of their plans and automatically become members of the Legacy Society.
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Join – Donors join the network of other Legacy Society members and receive special recognition.
Choose your Planned Gift
Planned gifts can come in many forms. Examples of planned gifts include:
- Endowment
- Giving though your Will
- Life Payment Plans
- Life Insurance Gifts
- Real Estate
- Life Estate Agreements
- Donor Advised Funds (DAF's)
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Member Information Updates |
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Chromosome 18 is working hard to provide more services than ever before to our families! To ensure that you receive these services, please take 2 minutes to update your email, phone number, and address here or by clicking the link below. If you have any questions, or would like to provide additional updates, please contact Michelle Dvorak at [email protected]!
THANK YOU to our members who have already taken the time to update their information with us!
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Thank You and Happy Birthday to Annice Hill, Chrissie Oh, Jeborric Evans, Kelsey Jordan, Michaela Tracy, Rhonda Bentley, Venoy Rogers, and Iwona Zalomska for celebrating their birthdays with Chromosome 18 by donating their special day on Facebook, raising funds and spreading the word about our great organization. If we missed your fundraiser, please contact [email protected] to let us know!
Thank you also to Shaunna Keller for hosting a Facebook Fundraiser in support of Chromosome 18!
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Did you miss our August Facebook Live Event? We featured Kendall Powell, Chromosome 18's Sibling Coordinator! View this informative broadcast here.
Be sure to tune in to the September Facebook Live Event, September 18th at 1800 (6:00 p.m. CST) - featuring Racine Ghiz!
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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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Vialet Family, Southeast, Trisomy 18
Willingale Family, UK
Pelaez Family, Southwest, 18p-
Ganji Family, Texas Area
Mccrossan Family, Ireland
Whaley Family, Great Lakes
Gurary Family, Mid-Atlantic, Trisomy 18
Haughey Family, Canada, Tetrasomy 18p
George Family, Southwest
Adam Family, UK, 18q-
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Tippie Family, Northeast
Waller Family, Great Lakes, Trisomy 18
Gasparyan Family, Southwest, 18q-
Souto Family, Portugal
Cavin Family, Southeast
Moyer Family, Mid-Atlantic, 18p-
Taber Family, Southwest, 18p-
Turner-Cavin, Great Lakes
Noll Family, Southwest
Verstreater Family, Great Plains
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Upcoming Calendar Events |
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Planning an event? Contact [email protected] to have the event listed in our newsletter and on our website!
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Do you have questions, or would you like more information about something in this newsletter? Contact [email protected] for more information.
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