|
210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
|
Chromosome 18 - February News
|
2018 Health Cell State of Industry Event
|
Dr. Jannine Cody was chosen as one of five industry leaders in San Antonio, TX to share her story at the
Health Cell State of the Industry Event on February 6, 2018. We were excited to be joined by over 400 community partners and leaders to support Dr. Cody and her work with both the Chromosome 18 Clinical Research Center and the Chromosome 18 Registry & Research Society. View additional pictures of this honored event
here.
Pictured left: John Drymala (Valero Energy and Treasurer, Chromosome 18 Registry & Research Society), Dr. Robert Hromas (Dean, Long School of Medicine), Dr. Jannine Cody (Founder & President, Chromosome 18 Registry & Research Society) , Dr. Andrew Meyer (Pediatric Critical Care, UT Health), Elizabeth Cody, Dr. Gail Tomlinson (Chairman, Department of Pediatrics, UT Health), Dr. Jane Lynch (Chief Pediatric Endocrinology and Diabetes, UT Health), Dr. Nila Escaname (Pediatric Endocrinology and Diabetes)
|
Celebrate Rare Disease Day with Chromosome 18
|
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
Rare Disease Day
is a great example of how progress continues to be made, with events being held worldwide each year. However, the road ahead is long with much progress to be made.
|
To celebrate and spread awareness of Rare Disease Day and honor Chromosome 18, wearing your chromosome 18 syndrome color, post your picture to our Instagram and public Facebook page on February 28th. Don't forget to use our hashtag - #c18rdd
One winner will be randomly selected and will win a Chromosome 18 shirt & hat!
|
|
|
Chromosome 18 Clinical Research Center
|
The
Chromosome 18 Clinical Research Center has released its
Seizure Survey Report. Read the full report. An explanation video of the data can be viewed below.
|
Courtney Sebold, Chromosome 18 Clinical Research Center's Genetic Counselor,
issued a new article, "The Rarest of the Rare
",
which discusses revealed recessive mutations and chromosome 18 conditions
.
See full article
here
.
|
2017 Chromosome 18 Annual Report
|
In an effort to better serve our members, our 2017 Annual Report
summarizes the highlights of the past year. Thank you to our members, donors, and community partners for making 2017 one of our most successful years ever! Financial reports can be found on our
website under Resources/Financial Statements
or click
here.
|
2018 Chromosome 18 Decoded:
25th Annual Family Conference - Book Now
|
New name - nothing's changed! We are celebrating the 25th Anniversary of the Chromosome 18 Annual Conference this year under the new name - Chromosome 18 Decoded. The 2018 Chromosome 18 Decoded will be held at the
Renaissance Baltimore Harborplace Hotel
from Monday, July 2nd through Wednesday, July 4th in Baltimore, Maryland.
Registration is OPEN
, and full details can be found by clicking below. Be sure to secure your hotel room at the Chromosome 18 discounted rate here.
Everyone must pre-register online. There will be no on-site registration.
|
Donors Making a Difference
|
We are honored to have received a
$25,000 anonymous donation through the
Silicon Valley Community Foundation. Continued research, outreach, and education of chromosome 18 conditions is possible through generous donors such as Silicon Valley Community Foundation -
Thank you!
|
Kristy Holder who'll be participating in the Official Fiesta Event - Chromosome 18 Starfish Dash on April 28th, is fundraising for Chromosome 18 in honor of her son, Weston with the sales of
the soft tee for youth and adults (see right). So far, Kristy has raised nearly
$250 with the profits from her designed shirt.
Thank you, Kristy!
Click
here for more information or to order your shirt.
|
|
|
Julia Furgiuele
enjoyed
her
6th Annual Ice Skating Party
with friends and family having fun, staying warm and raising a cool nearly
$3,300
for Chromosome 18. See pictures and complete story
here
.
Thank you, Julia!
Camilla Downs and Lillian Darnell
hosted our monthly Facebook Live event.
Check out the topic and video link here. Thank you Camilla and Lillian!
|
Mike Fudala and Liz Woodfield joined up for winning team with their Super Bowl fundraiser - raising nearly
$2,000
for Chromosome 18. More info
here.
Thank you Mike and Liz!
Stacey Gallardo scored a touchdown with her Super Bowl fundraiser - raising
$5,200
for Chromosome 18. See how she did it
here.
Thank you, Stacey!
Grant Buchanan and his fraternity held a Super Bowl fundraiser giving reason to celebrate in the end zone by raising nearly
$1,100 for Chromosome 18. Be sure to
read more
for fundraiser honoree and picture.
Thank you Grant & Sigma Gamma Delta
|
|
Pictured left to right are Kelly Woods, Karyn Sides,
Lousie Porter and Neale Parker.
|
|
Chromosome 18 Registry & Research Society's Executive Director, Neale Parker, enjoyed a wonderful lunch in Auckland, New Zealand with three mothers of Chromosome 18 families and was greeted with their wonderful hospitality.
|
|
The whole Side's family (pictured right) were gracious enough to invite the Parson's family for tea on the way from the airport to downtown Auckland in the pouring rain.
|
|
|
We're looking for members to share their experiences via a short three to five minute video about their chromosome 18 condition and the
Chromosome 18 Registry & Research Society. Submitted videos may be featured on our
website, social media, and newsletter.
Your stories will assist newly diagnosed families and help boost awareness of chromosome 18 conditions and the Chromosome 18 Registry & Research Society.
|
Welcome to the Chromosome 18 Family
|
We are delighted to welcome the following families to Chromosome 18.
|
Allin Family, Canada
Foster Family, International, Trisomy 18
Henegar Family, South Central
Hill Family, Southeast, 18q-
|
Mesec Family, Southwest, 18q-
Roderick Family, Northwest, Trisomy 18
Shennib Family, Canada, Ring 18
Shu Family, Southwest, Trisomy 18
|
|
|
|
Volunteers are essential to our organization! Without the time, help, ideas and dedication of our volunteers, we would not be able to offer our services across the country and the world.
This month we would like to recognize
George Dunham
for the love of his daughter, running and Chromosome 18.
Saturday, June 2nd is the 5k mud-based obstacle course run known as the
Goliathon
in Mullica Hill, NJ. A few years ago, George Dunham, whose daughter Caroline has a partial trisomy 18, decided to turn his love of running these types of races into a fundraising event for Chromosome 18 Registry & Research Society.
This is the fourth year of fund raising. The first three years have seen over $25,000 raised for Chromosome 18.
If you are close to Mullica Hill, NJ and wish to take part in the run and fun, reach out to George at g_dunham@comcast.net.
"It's a great family event as kids are welcome." -George
|
|
Caroline & George Dunham with fellow Goliathon racers & Chromosome 18 supporters
|
|
|
Looking for ways to volunteer for Chromosome 18? 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.
If you would like to help with the upcoming Chromosome 18 Decoded, consider serving on the
2018 Conference Committee.
You don't need to attend or live in the area to assist. Contact the 2018 Conference Chair, Nichole McVicker,
mcvickern@chromosome18.org.
|
April 14th
(tentative) - Great Plains Starfish Pub Crawl - Normal, IN - Contact Kerry Connolly for more information.
|
Do you have questions, or would you like more information about something in this newsletter? Contact
office@chromosome18.org
for more information.
|
|
|
|
|
|