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
Epilepsy Awareness Day at Disneyland 2014
Epilepsy Awareness Day at Disneyland 2014

Thank you for your continued support of this project.  The Chelsea Hutchison Foundation is so excited to announce that we have just purchased our 256th life-saving movement monitors for those in need.  This is possible, in part, because of your generous support.  We work hard everyday as we receive 15-20 requests a month for help.

Here are the three monitors that we have provided.

Emfit Movement Monitor

SAMiAlert Monitor 

SmartWatch

We gathered across the United States (6 locations) in September to STOMP Out Epilepsy and SUDEP.  Organized walks took place in Colorado, Texas, Illinois, Kansas, Missouri and Virginia.  In addition, we had many virtual walkers join us that weekend from all over - even had some walkers in Canada.  This was our 5th Annual STOMP (formerly called Chelsea's Epilepsy Walk for SUDEP Awareness).  

On November 6th, we were lucky enough to be able to send 10 families to Epilepsy Awareness Day at Disneyland Resort 2014 because of one very special donor.  We took nominations and then randomly drew 5 single-parent families and 5 families who live with seizures and epilepsy.  This event was life-changing for these families and life-long friendships were made.  Community support is so important withe the isolation and misunderstandings that go along with this neurological disorder.  Chelsea Hutchison Foundation was asked to be a National Co-Host of this event and we were thrilled to be. Approximatley 1500 people gathered that day to raise awareness and show support.  

Thank you for your continued support!  When you donate to CHF, know that the funds we receive help families directly!

Respectfully

STOMP Out Epilepsy and SUDEP!
STOMP Out Epilepsy and SUDEP!
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On July 16, 2014, ten families dealing with epilepsy or seizure-related illnesses were awarded all-expense paid trips to the 2014 Epilepsy Awareness Day at Disneyland on November 5- 7, 2014, compliments of The Chelsea Hutchison Foundation and one very generous anonymous donor.  Nominees were gathered through the Chelsea Hutchison Foundation, and winners were selected through a random draw.

The award winners are the Pfier family from Mobile, AL; the Burnette family from Hardinsburg, KY; the Bergstrom family from Douglas, MA; the Borel family from Port Arthur, TX; the Nelson family from Eden Prairie, MN; the Varnell family from Ft. Carson, CO; the Luna family from Hammond, IN; the Rudisaile family from Aurora, CO; the Weigand family from New Philadelphia, OH; and the Lyles family from Peyton, CO.

The 2014 Epilepsy Awareness Day at Disneyland is held in honor of Mattel Children’s Hospital UCLA, The Chelsea Hutchison Foundation, and the Danny Did Foundation. Award winners will attend the kick-off event on November 5 to learn more services, organizations, and information for the epilepsy community. On November 6, the families will enjoy the entire day at Disneyland in Anaheim, California. The experience will conclude on November 7 with a Picnic for all participants of the 2014 Epilepsy Awareness Day.  For these families, a trip like this is otherwise out of the question with the financial demands placed on them dealing with illness.

The Chelsea Hutchison Foundation serves individuals, families and communities affected by epilepsy by raising awareness of the common yet little-known condition SUDEP (Sudden Unexpected Death in Epilepsy), by providing support, grants for seizure-response dogs and equipment for prevention of this occurrence, and by creating a safe space and raising awareness within the greater community. The Foundation was founded in 2009 by Doug and Julie Hutchison after the sudden and unexpected death of their daughter, Chelsea.

Currently, the cause of SUDEP is not known, although it is the cause up to 20% of deaths in epileptic individuals[i], and over one-third of deaths among epileptic children.[ii] Although there is little awareness of SUDEP, even among individuals with epilepsy and their families, it is still the leading epilepsy-related cause of death, well above accidents resulting from an epileptic seizure, [iii] and preventive measures can be taken.

For more information about the Chelsea Hutchison Foundation and the 2014 Epilepsy Awareness Day at Disneyland, please contact Julie Hutchison at ChelseasLegacy@aol.com or visit the website: www.ChelseaHutchisonFoundation.org.  If you would like to donate to to enhance these family's trips further, we would welcome that.  Click here if you wish to donate to that project.

Please know that no funds from Seizure-Response Dogs for those with Epilepsy will be used for the Disneyland trips.

 

[i] http://www.dannydid.org/sudep/know-the-facts/

[ii] http://www.cureepilepsy.org/aboutepilepsy/facts.asp

[iii] http://www.dannydid.org/sudep/know-the-facts/ (http://www.epilepsyfoundation.org/aboutepilepsy/healthrisks/sudep/index.cfm?CFID=12690957&CFTOKEN=41034784).

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SmartWatch Recipient
SmartWatch Recipient

Here is an update for this project.  We can’t thank you enough for continuing to contribute as many of you do.   The stories we receive from those we’ve helped will warm your heart.  Because of you and others like you, we are able to get the help directly into the hands of those who need it.

You sponsored me with the EMFIT Monitor and it has been a true blessing. We had a baby monitor before but it never gave me the security I needed in knowing that she was OK or that the little sounds she would make were only snores and not a seizure. We have just recently started using it and I fill at peace already. We tested it and tested it and retested it just to make sure that even the lightest touch would be detected.  I feel very secure with this device. You will never know how much you helped me and our family with your gift..the gift of peace..and you could almost consider it a gift of life, because now my daughter can live through a normal sleep and I can have a normal life of sleep. 

Comedy for Canines took place on May 2, 2014.  This is one of our two large annuual events.  Comedy for Canines was our 5th Annual Spring Gala and the feedback was spectacular.  We plan to continue this event as many felt this was the perfect mix.  Everyone ended their evening with hysterical entertainment.   We had three remarkable individuals and their families talk about the difference their seizure-response dog has made in their lives.  There wasn’t a dry eye in the place.  One amazing woman by the name of Diana stated to our crowd that not only does her seizure-response dog alert and respond to her seizures, but just a few days prior had summoned emergency help when she suffered a heart attack.  She was alone that evening – her husband was traveling.  Roxy realized what was going on and sounded the alarm and in minutes, emergency help arrived.  Diana felt, without a doubt, that Roxy had saved her life that evening. 

CHF just paid its 62nd grant for a seizure-response dog and has now provided 212 life-saving movement monitors across the US.  Having lost Chelsea to a seizure through the night, we are determined to make sure everyone who needs our help receives it. 

Watch for STOMP! Out Epilepsy and SUDEP Awareness Walk which will take place in several locations across the United States in September.  This is also the 5th Annual Awareness Walk – formerly called Chelsea’s Epilepsy Walk for SUDEP Awareness.  Known locations at this time are Colorado, Missouri, California, Virginia, Texas, Kansas and Illinois.  We would love you to join us at one of these walks if you are nearby.  If not, we will be posting virtual walking and team opportunities!! 

Comedy for Canines
Comedy for Canines
STOMP
STOMP

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I wanted to give you an update on how this project is progressing.  This is an ongoing project as we continue to receive 3-5 requests a week for help.  Because of your help, and others like you, we have had the privilege of providing over 180 life-saving monitors to those who suffer from seizures.  It is estimated that up to 50,000 seizure-related deaths occur each year in the United States so it is critical to get these lines of defense in the hands of families who deal with the every day effects of epilepsy.  Chelsea Hutchison Foundation (CHF) feels strongly that if we had known about these monitors - or had even known that a seizure could be deadly - we might still have our Chelsea with us.  

The Chelsea Hutchison Foundation ensures that ALL in need will be served by helping people on a first-come first-served basis rather than case-by-case, assuring that anyone who feels they need help – and may not qualify elsewhere – receives the help they need. CHF recognizes that SUDEP can happen during any seizure, even those experienced relatively infrequently, and seeks to provide those individuals and families with the same level of care and support they provide to all families.

In addition to our Globalgiving campaigns, CHF holds two major fundraisers each year.  On, May 2, 2014, we will hold its annual gala at The Curtis Ballroom located at Comedy Works South in Greenwood Village, CO. This year, our theme is Comedy for Canines and our headliner for the evening will be Kevin Fitzgerald, best known for his 10 seasons on the popular Animal Planet show, Emergency Vets. Kevin is a great comedian and his passion for making people laugh is surpassed only by his unwavering dedication to all creatures great and small.  If you are in the area, we would love you to join us.  For more information or to register, please visit www.ComedyforCanines.org.

Every fall, the Chelsea Hutchison Foundations hosts STOMP! (formerly Chelsea's Epilepsy Walk for SUDEP Awareness), an epilepsy walk for Epilepsy and SUDEP awareness. The fundraiser is currently held in six cities across the country (Littleton, CO, Wichita, KS, WInchester, VA, Woodbridge, VA, Eldon, MO, Northfield, IL), and expands to new cities every year. Nine to ten cities are expected to be added this year alone.  Watch for details.  There may be an organized walk near you!

Thank you again so much for your continued support!  You are making a big difference!

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Thank you again for contributing to our project and for allowing us to grant comfort and hope to those living with seizures.  Because of you and others like you, we have now provided over 160 seizure monitors for those in need.   

Epilepsy affects over 3 million Americans of all ages - more than 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 50,000 Americans die from seizures and seizure-related causes every year in the United States.  Many parents and caregivers watch their loved ones seize 80-100 times a day.  

In September, we completed our 4th Annual Chelsea's Epilepsy Walk for SUDEP Awareness.  What started out as a small gathering of good friends and family in Littleton, CO, has grown to organized walks in (6) locations across the United States.   We have been approached by groups in (4) additional States for 2014's walk.  We will be changing the name of the walk to STOMP! out SUDEP and Epilepsy.  Watch for a walk in your area.

CHF has been asked to be one of the National Co-Hosts of the 2nd Annual Epilepsy Awareness Day at Disneyland Resort, 2014.  We attended the 1st Annual last month, in fact, due to the generosity of an anonymous donor, we were able to take (2) families with us who might not otherwise have ever had the opportunity to go.  It is estimated that there were approximately 10,000 visiting the Park that day, 1,000 of whom were sporting specially branded purple tshirts raising epilepsy awareness.

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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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