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March 2025 Webinar Update

By on April 14, 2025 in Events

It was wonderful to see so many of you last Friday at our CS webinar! Many thanks to all who attended, it was a great opportunity to come together, to share the research being done here at Brown University, and to hear from families about your experiences and concerns.

I know some of you were not able to attend the webinar, so we would like to share with you a recording of the presentation. You may access the recording here: https://www.youtube.com/watch?v=tMQ1sdZb9C8.

We have translated subtitles available in several languages. Please click on the button at the bottom of the screen that says “CC” and then use the settings button next to that pull up language options for closed captioning language options:

If you would like to read the full paper that was presented, you may access the paper here: Christianson syndrome across the lifespan: genetic mutations and longitudinal study in children, adolescents, and adults | Journal of Medical Genetics.

For those of you who indicated on your conference registration that you would like to be contacted by the research team, we will be in touch with you soon. You may feel free to reach us at this email address as well (CSNetwork@brownhealth.org).

Thank you for your ongoing support! It is truly a privilege to do this work with our families, and we appreciate your many contributions to help us advance CS research.

If you have any questions for the research team, please be in touch!

Sincerely,
Carrie Best on behalf of the CS Network study team

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12th Annual Loop for Luke

By on March 18, 2025 in Events

Saturday April 26th, 2025
Arrive 2PM with Departure at 2:15PM

8671 Open Meadow Way
Columbia, MD 21045

Please join the Wright Family for either a 9 mile bike loop to Lake Elkhorn or a 2.5 mile walk or bike loop to Jackson Pond. Afterwards we’ll enjoy snacks and fellowship in our backyard. Please bring your bike helmet or tennis shoes and a blanket or chair for comfort. RSVP to Julie at 443-812-8985 or juliewright41099@gmail.com to ensure we’ll have enough goodies for our Loopers. 🙂

Can’t be with us in person? Join us virtually and send your Loop pics or videos to christiansonsyndromeassn@yahoo.com to share with others.

If you choose to donate to CSA please make checks payable to Christianson Syndrome Association and send it to us by April 26th or donate online at this website (indicate Loop for Luke in the “Add special instructions to the seller” section). All proceeds go to CSA.

Loop for Luke 2019
Loop for Luke 2019

11th Annual Loop for Luke

By on March 12, 2024 in Events

Saturday April 20th, 2024
Arrive 2PM with Departure at 2:15PM

8671 Open Meadow Way
Columbia, MD 21045

Please join the Wright Family for either a 9 mile bike Loop to Lake Elkhorn or a 3 mile walk Loop to Jackson Pond. Afterward we’ll enjoy snacks and fellowship in our backyard. Please bring your bike helmet or tennis shoes and a blanket or chair for comfort.

RSVP to Julie at 443-812-8985 or juliewright41099@gmail.com to ensure we’ll have enough goodies for our Loopers. 🙂

Can’t be with us in person? Join us virtually and send your Loop pics/videos to christiansonsyndromeassn@yahoo.com to share with others.

If you choose to donate to CSA please make checks payable to Christianson Syndrome Association and send it to us by April 20th or donate here on this website (indicate Loop for Luke in the "Add special instructions to the seller" section). All proceeds go to CSA.

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The sun was shining in Columbia MD for the 2024 Loop for Luke. So much love and laughter was shared by families and friends in support of Christianson Syndrome. This year's event raised almost $10,000.00 with participants raising awareness around the world. Thank you again to the Wright family and everyone else who helped make this a wonderful event!!

Loop for Luke 2019
Loop for Luke 2019

2023 Loop for Luke

By on May 22, 2023 in Events

Stephen and Julie Wright did it again!! This event just keeps getting better. The continued support and love from their family and friends is second to none. Several of our CS families along with Dr Morrow and his outstanding research team were able to attend. As well we had people participating virtually. Dr Morrow was able to share some research, and families were able to converse with one another about what they were experiencing. The rain came, but that did not stop the walk. It was a great splash day enjoyed by all to show support for our CS families and to honor Luke XO See you next year J

2023 Loop for Luke video thumbnail
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10th Annual Loop for Luke

By on March 12, 2023 in Events

Saturday April 22nd, 2023
Arrive 2PM with Departure at 2:15PM

8671 Open Meadow Way
Columbia, MD 21045

Please join the Wright Family for either a 9 mile bike Loop to Lake Elkhorn or a 3 mile walk Loop to Jackson Pond. Afterward we’ll enjoy snacks and fellowship in our backyard. Please bring your bike helmet or tennis shoes and a blanket or chair for comfort.

RSVP to Julie at 443-812-8985 or juliewright41099@gmail.com to ensure we’ll have enough goodies for our Loopers. 🙂 Can’t be with us in person? Join us virtually and send your Loop pics/videos to christiansonsyndromeassn@yahoo.com to share with others. Finally, $10 Loop for Luke t-shirts are back by popular demand (and growing children)! If interested contact Julie by March 29th, 2023. If you choose to donate to CSA please make checks payable to Christianson Syndrome Association and send it to us by April 22nd or donate online by clicking on Make a Donation on the right sidebar (indicate Loop for Luke in the message line). All proceeds go to CSA.

Loop for Luke 2019
Loop for Luke 2019
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7th Annual Loop for Luke

By on April 6, 2020 in Events

Loop for Luke

Saturday April 25th, 2020 at 11am
Sponsored by the Wrights

Coronaloop! The coronavirus COVID-19 pandemic has left nothing untouched, including our annual fundraiser. To that end, we will hold a virtual Loop. Please join our family in your own neighborhood (or socially distant acceptable alternative J) for a loop walk, run, or bike ride. Our goal is to walk 3 miles.

Contact Julie at jreichelt@yahoo.com to let us know if you’ll participate virtually and possibly share pics afterwards of your Loop.

If you choose to donate to CSA please make checks payable to Christianson Syndrome Association and send it to us by April 24th, or on our website (indicate Loop for Luke in comments section).  All proceeds go to CSA.

Loop for Luke 2019
Loop for Luke 2019
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Grace Lofton Runs for CSA

By on July 8, 2019 in Events

Grace Loftin, 8 years old, made CSA her reason to run in the 2019 Typhoon Texas Kids Tri. She put her whole heart into it and was able to raise $1100.00 for our cause. Thank you Grace - we all appreciate your love and effort for our children. You are AMAZING!!

Grace and Andrew - Reason to Run

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WyWy Warriors Walk 2019 Update

By on July 8, 2019 in Events

WyWyOn May 25, 2019, the Brewster family held their 3rd annual walk benefiting CSA. This was their second year to have the mayor declare May as CS Awareness month in Bryant, AR! The mayor and his wife attended the walk this year. The walk was at Mills Park, which is now an accessible park.  The Brewsters always have a laid-back walk, where people can come, have some snacks, walk as long as they want on the nature trail, and play on the playground or just hang out and talk.

Wywy group photo 2019

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