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Get Your Heart Beating for CSA 2018

By on February 5, 2018 in Events

Show your support and honor our amazing children and their families who are dealing with this rare genetic disorder. Registration opens February 14th through June 2018

What is a Virtual Race?
A virtual race is a self-motivated competition that is organized online where you complete a specific distance by running, walking or cycling on a date and time of your choosing, anywhere in the world. Virtual racing can be done on a treadmill at home or at the gym, at the beach, with friends, alone, in the evening, or at the break of dawn, it’s your choice.

Sign up on-line at www.csa-cares.org $25 per participant (includes t-shirt)
Once you sign up you just need to get out and Get Your Heart Beating and raise awareness for CS. Take lots of pictures and videos and submit them to us for posting on our website and Facebook page.
Our Twitter and Instagram is #CSAHeartbeat.

Save the date:
Several non-virtual events have been planned in Arkansas, Kansas, Houston and Toronto.

Arkansas – May 19 Contact Olivia Brewster livb88@gmail.com
Toronto –TBD Contact Wanda Coletta wandacoletta@hotmail.com

Our Get Your Heart Beating Events in Cypress, TX and in Kansas on May 5, 2018 was a great success! Thanks for your support!

Show your support and honor our amazing children and their families who are dealing with this rare genetic disorder.

Get Your Heart Beating for CSA!

View #CSAHeartbeat Images on Instagram

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Get Your Heart Beating for CSA 2017

By on February 10, 2017 in Events

We want you to become a part of our 2017 Get Your Heart Beating event! Thanks to all our participants we raised $11,000.00 in 2016 and have a goal of $20,000.00 for 2017. All you need to do is sign up and pay your race fee online and then you go run, walk, swim or bike. You can even create a team of friends, family or co-workers. Everyone will sign up online and then you all can get your heart beating for CSA!

With a traditional run/walk or biking event you can arrive at a specific location on a specific date at a specific time. For our race, you start and complete your race on your course, take lots of pictures and videos and submit them to us for posting on our website and Facebook page. Our Twitter and Instagram is #CSAHeartbeat.

For those of you in the Houston, TX area, plan to join the Nash family on a date yet to be determined in May for a GYHB Walk event. We invite all our Texas participants to come out and get your heart beating for CSA

How to sign up – Click the Registration link below and it will take you right to Constant Contact where you can register. Then, get your group together April 3, 2017 through May 31, 2017. You can run, bike, swim or walk your own race. Email your photographs to info@csa-cares.org with your name, your team’s name (if applicable), your race location, event and time. Just remember to have lots and lots of fun!

Register here for Get Your Heart Beating for CSA!

If you are unable to participate in our virtual event and just want to make a donation to CSA, please click on the donation button below and in the notes section of PayPal please note that this donation is in honor of Get Your Heart Beating for CSA!

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3rd Annual Loop for Luke

By on April 6, 2016 in Events

Loop for Luke

3rd Annual Loop for Luke

Saturday May 21st, 2016 – 11am

Lindale Middle School Parking Lot

415 Andover Road, Linthicum, MD 21090

Please join The Wright Family for a 11-mile family friendly bike ride.  The trail is paved and the pace will be easy going.  Bring your helmet and a picnic lunch to enjoy afterwards.  We’ll supply water and dessert.  Contact stephenwright41099@gmail.com or (410)750-7128 if you can join us, or for more information.

If you choose to donate to CSA, please make checks payable to Christianson Syndrome Association and send it to us by May 21st, or online (indicate Loop for Luke in comments section), or bring it with you to the bike ride.

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Get Your Heart Beating for CSA 2016

By on January 28, 2016 in Events

We want you to become a part of our 2016 Get Your Heart Beating event! Thanks to all our participants we raised $8,000.00 in 2015 and have a goal of $25,000.00 for 2016. All you need to do is sign up and pay your race fee online and then you go run, walk, swim or bike. You can even create a team of friends, family or co-workers. Everyone will sign up online and then you all can get your heart beating for CSA!

With a traditional run/walk or biking event you can arrive at a specific location on a specific date at a specific time. For our race, you start and complete your race on your course, take lots of pictures and videos and submit them to us for posting on our website and Facebook page. Our Twitter and Instagram is #CSAHeartbeat.

For those of you in the Houston, TX area, on Saturday May 7, 2016 the Nash family will be holding a Get Your Heart Beating Carnival at the Good Shepherd United Methodist Church in the Fairfield subdivision in Cypress. We invite all our Texas participants to come out, get your heart beating, and then enjoy a day of food, games and lots and lots of fun!

How to sign up – Click the Registration link below and it will take you right to Constant Contact where you can register. Then, get your group together May 1, through June 12, 2016. You can run, bike, swim or walk your own race. Email your photographs to info@csa-cares.org with your name, your team’s name (if applicable), your race location, event and time. Just remember to have lots and lots of fun!

Register here for Get Your Heart Beating for CSA!

If you are unable to participate in our virtual event and just want to make a donation to CSA, please click on the donation button below and in the notes section of PayPal please note that this donation is in honor of Get Your Heart Beating for CSA!




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Cooper’s Carnival Raises $4,143 for CSA

By on September 22, 2015 in Uncategorized

Cooper's CarnivalThe 1st Annual Cooper’s Carnival: Christianson Syndrome Awareness Day was held on August 15, 2015 at the Harrogate City Park in Harrogate, TN. The event was hosted by Lincoln Memorial University-DeBusk College of Osteopathic Medicine student clubs in honor of Cooper Jackson, the only child diagnosed with Christianson Syndrome in the tri-state area. The purpose of the event was not only to raise funds but also to raise awareness about CS.

The day was a huge success with dozens of friends, family, and children from the community in attendance. Over $4,000 was raised with 100% of the proceeds going to CSA.

The Jackson Family would like to thank all of the students from LMU-DCOM, led by Blair Combs along with the Pediatrics and PASSAGE student clubs, for all of their hard work and dedication that made Cooper’s Carnival an amazing event. Their incredible effort far surpassed all expectations. A big thank you to the Cumberland Gap Fire Department for coming out to show their support and Heavy’s BBQ for donating a portion of their earnings from the day.

Lastly, the Jacksons would like to express their gratitude to founder and president of CSA, Debbie Nash, for traveling to East Tennessee to attend Cooper’s Carnival and address all those who were in attendance, including all of our wonderful volunteers who will carry the knowledge of Christianson Syndrome into their own medical practices someday.

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Stickin up 4 CSA

By on July 12, 2015 in Uncategorized

Once again we are very excited to thank the students and staff of Jowell Elementary school in Houston, TX.  The student council voted to once again hold a fund raiser to benefit CSA.  “Stickin Up 4 CSA” raised $1084.55.  Thank you to all who participated!!!!

 

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2015 Loop for Luke Raises Over $6000 for CSA

By on June 21, 2015 in Uncategorized

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2015 Loop for Luke raises over $6,000.00 for CSA

 

In June of 2013 we had the opportunity to experience CSA first hand.  Our family attended the CSA Inaugural Conference and it was life changing for us.  “Loop for Luke” was born because we wanted to help raise awareness and further the mission of Christianson Syndrome Association.  Biking is an important part of our lives, Stephen and Luke ride a specialized tandem bike that allows us to ride as a family.  “Loop for Luke” was something we could do together, it was also something we could invite others to participate in as well.  On May 31, 2014 near Baltimore, MD we held our first  “Loop for Luke” and raised $2485.00.  Last month we held our 2nd Annual “Loop for Luke” and it was an even greater success.  Our family and friends were once again so generous and they helped us raise over $6,000.00 for CSA.  We are so blessed and we want everyone who participated and donated to know that “It meant so much to us to do something we love with those we love and in turn be able to give back to CSA”.  Thank you to all of you!

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1st International Basic and Clinical Science Conference on Christianson Syndrome

By on June 21, 2015 in Uncategorized

In Conjunction with the Christianson Syndrome Association (CSA) Family Meeting
Hyatt Place Hotel, The Woodlands, TX, July 30th – August 2nd 2015

Christianson syndrome (CS) is a newly recognized X-linked neurogenetic disorder caused by changes in the SLC9A6 gene encoding the endosomal Na+/H+ exchanger 6 (NHE6) protein.

photo23Confirmed Speakers Include:

  • Special lecture by Huda Zoghbi, Baylor College of Medicine
  • Arnold Christianson, South African National Health Laboratory Service emeritus
  • Laurent Counillon, University of Nice
  • Robert Edwards, UC, San Francisco
  • Sofia Lizarraga, University of South Carolina
  • Anne McKinney, McGill University
  • Eric Morrow, Brown University
  • John Orlowski, McGill University
  • Annapurna Poduri, Boston Children’s Hospital
  • Rajini Rao, Johns Hopkins School of Medicine
  • Charles Schwartz, Greenwood Genetic Center
  • Jakub Sikora, Charles University – Prague
  • Petter Stromme, University of Oslo
  • Steven Walkley, Albert Einstein College of Medicine

Click Here to Register or for more information email ChristiansonSyndromeMeeting@gmail.com

There will be opportunity to present scientific abstracts as a talk or poster. Please submit your title and abstract (250 word limit) to ChristiansonSyndromeMeeting@gmail.com

Co-Organizers:

Eric M. Morrow MD, PhD
Associate Professor, Brown University and
Steven U. Walkley DVM, PhD
Professor, Albert Einstein College of Medicine

Generous Sponsorship Provided By:

The Company of Biologists and
National Institute of Neurological Disorders and Stroke

Click here for a printable flyer

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