Author Archive | admin

Grace Lofton Runs for CSA

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

0

WyWy Warriors Walk 2019 Update

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

0

Ty and His Teams Report

On June 8th 4th the Hayden family hosted their 4th Annual CSA Walk. Ty is loved by so many and we are always so happy to see the love on his special day. The walk celebrates Ty and raises money and awareness for CSA. Their first walk was at local park. They invited a few close friends and family and raised a few hundred dollars. The next year the Haydens decided to host it at their house and have a walk and bbq. They've had over a hundred people each year since and raised over $1000 each year.

They spend the evening hanging out with friends and family so they can share stories about Ty and tell them why it is important to raise money for CSA. This year they honored the 5 boys we have lost. It is important to the Hayden family, and to all of us, that we keep their memory alive. We are all family and losing them was hard on all of us.

The Haydens raise money for CSA because they believe in the organization. Amy says that Dave and she used to be on the walk committee for Autism Speaks and left the organization even before Ty got his CS diagnosis because so much money was going toward salaries of their employees. They love that the money they raise goes to CS conferences and research. No one is getting paid a million dollar salary!!  Every little bit counts. Amy continues, some people raise way more money than them and she used to think maybe they shouldn’t do their event because the amount raised was so small compared to other events being held by other families. They have been to two conferences now and want to make sure they continue. They walk to raise money and awareness. They walk for all the families and would love for you to join them next year in Kansas or virtually.

Hayden family 2019 Ty's Team
0

6th Annual Loop for Luke

Loop for Luke

This May Julie and Stephen Wright hosted the 1st Regional CSA Family Gathering. On Friday May 17th they kicked off the weekend with a “welcome” pizza dinner at their home. It was a great opportunity to meet new families and reconnect with old ones. Saturday May 18th they had the 6th Annual Loop for Luke to support Christianson Syndrome Association. It was a picture perfect day with both bike riders and walkers. Four CSA families joined them this year. In total, they had 56 walkers and riders from all over the USA. There was great conversation and laughter along the trail and everyone enjoyed the delicious post ride / walk luncheon. This time for fellowship and relaxation is always a lot of fun. We were thrilled that the event raised over $9,000.

Later in the evening the CSA families had the opportunity to meet again. Julie and Stephen planned a dinner gathering at their church. The group learned about the biology of CS in layman’s terms, were updated on ongoing research being conducted at Brown University, and had a round table discussion about specific challenges faced. It was a wonderful way to end a memorable and meaningful day. Stephen and Julie reported they were reminded that CSA’s strength is in the network that’s being created – instilling hope and connectedness among those involved.

Loop for Luke 2019
Loop for Luke 2019
0

5th Annual Loop for Luke

Loop for Luke

5th Annual Loop for Luke

Saturday May 19th, 2018 – 11am

Lindale Middle School Parking Lot

415 Andover Road, Linthicum, MD 21090

Please join The Wright Family for EITHER the 11-mile family friendly bike ride OR walk a portion of the trail. Bring your helmet or your tennis shoes and a picnic lunch to enjoy afterwards. We’ll supply water and dessert.  Contact jreichelt@yahoo.com to RSVP 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 18th, or online (indicate Loop for Luke in comments section), or bring it with you to the event. All proceeds go to CSA.

Click here for a downloadable flyer

0

Get Your Heart Beating for CSA 2018

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

0

Get Your Heart Beating for CSA 2017

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!

0

3rd Annual Loop for Luke

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.

0

Get Your Heart Beating for CSA 2016

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!




0

2015 Loop for Luke Raises Over $6000 for CSA

photo 2 photo 1

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!

0