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
Monitor Recipients 2019 (1)
Monitor Recipients 2019 (1)

Greetings!  We are so grateful for your support and wanted to show you some of Chelsea's good work.  Your support means the world to us and to those we serve!

The Chelsea Hutchison Foundation is a Colorado nonprofit corporation formed to provide help and support to individuals, particularly children and young adults, who have epilepsy. Chelsea touched many lives during her short 16 years here, and we are amazed at how many people she continues to touch through the foundation even after her passing.  Her generous heart longed to see love and care come to others.

In her memory, The Chelsea Hutchison Foundation is designed to assist people living with epilepsy.  Funds raised by this foundation provide grants for fully trained seizure-response dogs and for, what we believe to be, life-saving movement monitors to those in need.  We educate the public about SUDEP (Sudden Unexplained Death in Epilepsy) and provide support to those who have been affected by SUDEP.  The Chelsea Hutchison Foundation exists to raise awareness of SUDEP and to grant comfort, hope, and positivity to individuals and families living with epilepsy. 

To date, The Chelsea Hutchison Foundation has had the privilege of providing 122 seizure-response dog grants and has provided over 765 nighttime and daytime monitoring devices for those in need. You might ask why we provide these monitors as certainly they are covered by insurance, but they are not.  We have awarded 61 families with wish trips to the one-of-a-kind Epilepsy Awareness Educational Expo and Day at Disneyland. The Expo offers a wealth of information and exposure to professionals, treatment options, education, and hope.

Moving forward, we would like to highlight one of the six different monitoring devices we provide so help you understand the importance.

PulseGuard Monitor, Night-time Monitoring Device

PulseGuard Mark II is monitoring system designed to detect and alert to any seizures that are associated with a rise or fall in the heart rate, as well as sudden medical emergencies that cause a sudden fall to the heart rate. The system consists of three components - A wrist or ankle worn sensor, a Dedicated PulseGuard tablet pre-loaded with the specialist PulseGuard software and a failsafe paging system. The sensor has a soft adjustable elasticated strap, suitable for babies right up to adults, is fully waterproof and has a battery life of 24 hours with a 2 hours charging time. The PulseGuard tablet needs to be within 10 meters of the sensor at all times when in use as it communicates with the sensor via Bluetooth technology.

The parent’s paging system has a range of up to 450 meters and allows the parent or caregiver to be alerted as soon as the users heart rate rises or falls outside the unique heart parameters set. It will also alert should the sensor become disconnected, the system suffers any software issues that cause the program to unexpectedly stop, or the pager loses connection to the system at any time, making it a failsafe system. PulseGuard is not a medical device. It is designed as a monitor for personal use.

Recent Testimonials

"For the first time in almost three months I can sleep without jumping at every sound or movement! This foundation is amazing and the work they do is priceless." Candace J. 

"Honestly can't even put into words how humbled I am, my 4 year old son started with seizures 3 months ago and was diagnosed with epilepsy within 3 days due to the extent of his seizures. He suffers worse at night time and early Monday morning I thought I was going to loose my baby! Unfortunately I am not currently in a situation financially to be able to afford an Emfit bed system and the Chelsea Hutchinson foundation has made this possible for me! Such an inspiration to us all, the kindness shown is unbelievable. Fast response to messages and listened to me waffle on while my heads been a mess! Can't thank you enough."  Jade W.

Upcoming events
Epilepsy Awareness Day at Elitch Gardens 2019 - Denver, CO
STOMP Out Epilepsy and SUDEP 5k Walk/Run - coming to several Locations across the United States in September 2019.

Enjoy seeing just a small sampling of those beautiful children and adults we have had the privilege of serving in just 2019 alone.  To date in 2019, we have already provided 78 monitors.

Monitor Recipients 2019 (b)
Monitor Recipients 2019 (b)
Monitor Recipients 2019 (c)
Monitor Recipients 2019 (c)

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It was a busy 2018 for The Chelsea Hutchison Foundation.  We continue to reach far and grant comfort and hope to those affected by seizures/epilepsy. 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.

With your generous support and the support of others and our events, we have provided funding for over 725 life-saving monitors to date. We thought you might enjoy see some of our most recent recipients.

These monitoring devices can alert a parent or caregiver of a seizure and allow them an opportunity to administer life-saving measures if necessary. We believe that every epilepsy diagnosis should come with a monitor, but sadly they don't. Insurance does not cover these devices. Epilepsy affects over 3 million Americans - 65 million worldwide. This is more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease - COMBINED!

"When our daughter was diagnosed with epilepsy at age 1 1/2, my biggest fear was her having a seizure at night. I hadn’t even heard of SUDEP (Sudden Unexpected Death in Epilepsy) and the docs certainly didn’t tell me it was a thing. I was labeled a paranoid mom and told she would be fine. At the time, she’d never had seizures at night. Then her epilepsy returned at age 12. At age 13 she had her first (that we knew of) tonic clonic in the middle of the night. By this time, I had researched SUDEP and knew my fears were not in my head. So we bought an alarm. And it failed. Multiple times. Two of those times during nighttime tonic clonic seizures. But like so many middle class families, we didn’t exactly have the expendable funds to purchase yet another seizure alarm. Especially if we weren’t sure it would work. Someone told us about The Chelsea Hutchison Foundation and I’m writing this with tears in my eyes because sometimes human kindness doesn’t always show itself. But it did. When we were told we were approved for a SAMiAlert monitor, I couldn’t believe that someone would do that for us. For no other reason than to help us....kindness."  Vicki B. 

Thank you for your support! Your support could possibly safe the life of someone struggling with seizures.

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This Tuesday is #GivingTuesday.  If you are so inclined to donate on this day, we would be so grateful if you would consider donating to The Chelsea Hutchison Foundation.  Whether you donate $5 or $500. Every little bit helps. Thank you for your support.
 
This #GivingTuesday @GlobalGiving is dividing $150,000 in matching funds among its nonprofit communityt members. How much we get depends on how much you give!  Help us win big.  Most grants are decided by a small handful of individuals.  @Globalgiving prefers to let donors decide!  Your donation will help us earn a portion of the $150,000 #Giving Tuesday incentive fund!
The Chelsea Hutchison Foundation grants comfort and hope to those affected by epilepsy through providing monitoring resources, vital information, and a safe haven for conversation and community.

Our main goal is to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and to make a positive difference in the lives of individuals and families living with epilepsy. 

We raise funds to provide education about SUDEP and to provide seizure response dog grants and movement monitors that help to protect against SUDEP.  Through Chelsea's Wish, we grant trips for families to participate in the life-changing Epilepsy Awareness Day and Educational Expo at Disneyland each year. We just returned from the 2018 event where we had the privilege of granting 17 families with all-major expense paid trips to participate - over 70 individuals.

We stay up-to-date on current trends in medical technology in order to be able to provide the most effective devices as they become available.

We respect the value and quality of life of every person living with epilepsy.

We are dedicated to providing opportunities that allow individuals and families greater independence, increased confidence, ability to enjoy social environments, and community understanding.

 
Thank you for your time.  Donate today and help us earn a share of $150,000 in matching funds and bonus prices from @GlobalGiving on #GivingTuesday.

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As we celebrate what would have been Chelsea's 26th Birthday, we are proud to announce that to date, in 2018 alone, we have had the privilege of providing 102 life-saving movement monitors.  We could not do this without you.  This brings our overall total to 612 since 2011.

"A few weeks ago, we received our SAMi Alert monitor.  A huge thanks to the help your foundation provided. I wanted to take a moment to thank you again for helping us to secure this monitor. We knew this monitor could help us gain the peace of mind we were so desperate for but until we started using it, we didn’t know how much this would change our lives. Our daughter has really been struggling with gaining control of her seizures. She has Lennox Gastaut Syndrome and her seizures are frustratingly resistant to treatment. The first week we had the monitor, it recorded a very scary seizure episode that we were able to then take to our daughter’s neurologist and show her. She was extremely impressed with the monitor itself and I told her all about Chelsea and the amazing foundation started in her honor. This monitor not only helps us to sleep better at night, it also helps us dial in our daughter's epilepsy treatment program because instead of describing a seizure episode, I’m able to show her neurologist exactly what is happening. This has been so life changing for us."

Enjoy the faces of some of our most recent recipients. Epilepsy affects anyone at any time.  Epilepsy affects over 3 million Americans of all ages - more then multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined.  Almost 500 new cases of epilepsy are diagnosed every day and it is estimated that up to 50,000 Americans die from seizures and seizure-related causes every year in the United States, yet most don't even know they are at risk.

Here are links to the different monitoring devices that we assist with.

Emfit Movement Monitor

SAMiAlert by Hipass Design

SmartWatch by Smart-Monitor

Thank you again for your continued support. 

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Thank you for your support of this ongoing project.  We receive 10-15 requests a week for assistance with life-saving movement monitors so your support is appreciated more than words can express.

To date, we have had the privilege of providing over 560 monitors, with a stack of several to fill this week.  Enjoy seeing the faces we've recently been able to help. 

We are currently accepting nominations for our all-major expense paid trips for our families to participate in Epilepsy Awareness Day and Expo at Disneyland this November. Ten to 12 will learn if they have been selected on July 16th. Our trips are selected by randon drawing as it would be too difficult to select one recipient over another, they are all so deserving.  If you are interested in knowing more about these life-changing trips, please go to our Chelsea's Wish facebook page and ask to join.  If you are interested in donating to this project, please click here.

STOMP Out Epilepsy and SUDEP Awareness walk will take place in many locations across the United States.  Visit our website for details and locations.  This will be our 9th annual STOMP.  If you aren't near any of our organized STOMPS and would like to participate, check out our virtual options.

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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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