Movement Monitors for Epilepsy Patients in Need

by Chelsea Hutchison Foundation
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Movement Monitors for Epilepsy Patients in Need
Movement Monitors for Epilepsy Patients in Need
Movement Monitors for Epilepsy Patients in Need

We've had a busy quarter with events and fundraising. We keep moving forward even with the COVID-19 obstacles to be able to bring peace to families who live with the exhausting effects of seizures.  Thank you for seeing the importance of this project and for your continued support.

We receive requests on a daily basis and because of your support and the support of others like you, we have now provided assistance with over 1,000 tangible, life-saving monitoring devices. These families sleep better knowing there is a line of defense in place for their loved one. While these monitors are still not covered by insurance, top epileptologists from across the US refer their patients to us for assistance.

Enjoy the beautiful faces of those who have recently received monitors.

"What a great organization! Very helpful in determining the best options for my daughter and connecting me with knowledgable vendors for seizure monitoring devices. Thanks to the foundation and their supporters I was able to obtain a device to help monitor my 2 year old daughters seizure activity during the night and ease some of the anxiety and sleepless nights that have been customary in our home. They help bring awareness to SUDEP and what families face on a daily basis when a loved ones lives with Epilepsy."  Jen A.

"I am so grateful for this foundation and everything it is doing to help parents through this rough diagnosis. Words can’t express the relief I am feeling now that I am able to have a SAMi monitor to help with my son."  Jessebell L.

Thank you for your continued support. Enjoy seeing the faces of those who benefit from your kind donations.

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While COVID-19 has dramatically affected our fundraising efforts, The Chelsea Hutchison Foundation has been able to continue our mission of providing tangible assistance to those who suffer with epilepsy and seizures. While not at the same pace as earlier in 2020, our extremely low overhead has allowed us this opportunity.

Soon we will reach 1,000 monitors provided - this means 1,000 families sleep better knowing there is a line of defense in place for their loved one. We believe (and hear this everyday) that monitors save lives. These monitors are STILL not covered by insurance, but top epileptologists from across the United States send their patients to us for help.

"I can't say enough about the CHF! When we were at our lowest, and lost as to how to help our son, they pointed us to the help we needed and walked beside us until we found answers. Starting with a listening ear, to finding us a Smart Watch Monitor, to guiding us to a Service Dog Company, then a trip to Epilepsy Awareness Day at Disneyland, where we found a Specialist, they have been there each step of the way. They work tirelessly in their daughter's honor to help others to not have to experience the same loss that they've been through." Jennifer R.

"The Chelsea Hutchison Foundation is a life raft in the turbulent seas of living with epilepsy; whether you are a caregiver, a sibling, or a person with the diagnosis. The monitors and service dogs that they assist with in acquiring are critical in surviving epilepsy medically, but the community they build amongst the various people living with epilepsy is critical socially and emotionally. My family has benefitted greatly from the passion they bring to helping people in the community, and I'm not sure we'd be where we are without them." Gene N.

For those of you interested in knowing about the different monitors available, here are the links.

Emfit Movement Monitor

SAMiAlert

Inspyre by Smart-Monitor

PulseGuard

Embrace by Empatica

Thank you for your continued support. Enjoy seeing the faces of those who benefit from your kind donations.

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We have been BUSY so far this year with seizure monitor requests and ordering our community the services they need to protect them from SUDEP (Sudden Unexpected Death in Epilepsy)!

Look at these amazing faces!  Our requests for monitors have continued to drastically increase, as news and awareness has continued to bring to light the risk of SUDEP, due to the influx of devastating losses we have seen publicly recently.  One of our biggest missions is to provide education and protection against SUDEP and we are so thankful to each of our supporters for allowing us to continue to provide these life-saving monitors to those in need!  

In past years, we have planned for 100 monitors a year.  In 2019 we provided approximately 150 and to date, in 2020, we have already provided 66.  These monitors are life-saving, but not covered by insurance.

We thank you for your support of this project.  By contributing, you are trying saving lives!

They helped provide my 14 month old son with a Sami3 camera to monitor him at night due to epilepsy. They are amazing group that is helping as many families as possibly to provide the equipment needed to alert for any seizures in a child. They are working with me again to get my 4 year old a Pulseguard for night time use. To have an organization that cares so much about others is a rare and wonderful thing. Having two children with epilepsy is scary and heartbreaking but organizations like this one help give your family added peace especially at nighttime.  Chris S.

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Chelsea was born into our lives on September 28, 1992. She brought more joy and love than we can express in words. She was a precious daughter, sister, niece, cousin, and friend. Chelsea was a light in the lives of many. At the age of 11, she began having occasional seizures. We were told how to manage these seizures, and Chelsea lived life to the fullest. At the age of 16, on the morning of April 9, 2009, we awoke to the nightmare that Chelsea had died unexpectedly after having a seizure in her sleep. Like many of the families we work with, we had no idea this danger existed.

We felt driven to help those living with epilepsy in the hopes that we could raise awareness of Sudden Unexpected Death in Epilepsy (“SUDEP”) and help prevent families from going through what we did. Maybe you heard of the passing of Disney actor, Cameron Boyce, to SUDEP in July. 

In our daughter’s memory, The Chelsea Hutchison Foundation strives to grant comfort, hope, and a community to individuals and families living with epilepsy. The funds raised are used to provide grants for seizure-response service dogs, life-saving movement monitors, and wish trips to Epilepsy Awareness Educational Expo and Day at Disneyland each year.

Celebrate with us! We have been lucky to empower thousands of people since we began.

To date, we have been blessed to provide almost 900 life-saving movement monitors to families affected by epilepsy. We also have been able to provide 124 grants for seizure-response dogs.  In addition, through Chelsea’s Wish, we have been privileged to provide trips to 83 families for learning, education, and fun at Disneyland’s Epilepsy Awareness Day held each November.  But the work is not over. As a matter of fact, with SUDEP being of national news after the passing of Cameron Boyce, the requests for assistance have dramatically increased.

We want you to know that you are appreciated. We would not be reaching all of those we have helped to date if it were not for you! Because of your advocacy, time, sharing, care, and gifts, we have and will continue to make a difference in many lives. 

We have had an increase in visibility nationally, and because of that we have seen a large increase in the number of requests. We still provide as many grants and devices as we can and will continue to do so. 

Your tax-deductible gift today will help us to provide:

  • Trained seizure-response service dogs for individuals and families
  • Life-saving movement monitors for individuals and for families
  • Life-changing learning, teaching, and awareness of SUDEP and epilepsy

Sincerely and with great appreciation,

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Thank you for your support of this wonderful project within The Chelsea Hutchison Foundation.  Life-saving movement monitors bring such peace to families struggling with an epilesy diagnosis of a loved one.  It has been our pleasure to bring such peace to approximately 850 families across the US. We've even had the privilege of serving families in Canada, UK and Australia.
"Life Saving for my daughter and son. They provide grants for Epilepsy monitoring and bring awareness for SUDEP. Without our Sami and anti suffocation pillows we would be lost. Just an amazing foundation." - Cymri V. - 
"The Chelsea Hutchison Foundation tirelessly works to spread awareness about SUDEP and provide monitors/service dogs for those living with epilepsy to have a sense of normalcy in their life. Our daughter has been the recipient of two different monitors; one that will alert us if she has a seizure during the day and the other while she sleeps. This has been a precious gift that provides us, her parents, a sense of security while allowing our 17 year old more independence. In addition to the life saving devices CHF provides information and understanding for families dealing with this neurological disorder. The impact that CHF has had on our family has been tremendous and ours is only one of the hundreds of families CHF has positively impacted."  Tara L.

With the recent National news the death of Disney’s actor Cameron Boyce to SUDEP (sudden unexpected death in epilepsy), our requests for assistance with monitoring devices has increased dramatically. While 3.4 million Americans are diagnosed with epilepsy, it is still common practice for healthcare providers to not fully disclose the risks involved, so when it hits national news, it becomes very real for this community.  We used to receive about 12-15 requests a week and now it is not uncommon to receive the same in one day.
There are six different monitoring devices that are now available to families. These monitors range in price from about $600 - $1000. We fight hard to keep up with the demand, but the past 2 months have almost pushed our limits. We sincerely appreciate those of you who continue to see the worth of our grassroots efforts.

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Organization Information

Chelsea Hutchison Foundation

Location: Littleton, CO - USA
Website:
Facebook: Facebook Page
Twitter: @ChelseasLegacy
Project Leader:
Julie Hutchison
Littleton, CO United States
$3,921 raised of $10,000 goal
 
93 donations
$6,079 to go
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