Our Initiatives

The OMSLife Foundation hosts events to raise money for research in the fight against Opsoclonus Myoclonus Syndrome (OMS) and raise general awareness of OMS. We also endorse OMS events being hosted by other organizations and families. For more information, please contact Mike Michaelis.

 

Current Events

 

October 1 - November 1 2014 - The 6th Annual OMSLife Teddy Bear Drive!!! 

Join us this year as we continue to spread awareness of OMS and raise money for OMS research.  Our goal is to raise $50,000 for OMS research and distribute 10,000 teddy bears and toys to children in 50 hospitals across the country.  Since 2009, we have been collecting teddy bears for hospitals and raising awareness about OMS.

 

We began in 2009 collecting 500 toys and teddy bears for Texas Children's Hospital (Houston).

In 2010, we collected 1,000 toys and teddy bears for two hospitals and collected $3,000 for OMS research.

In 2011, we expanded to 20 hospitals, 3,000 toys and teddy bears, and raised $14,000.

In 2012, we exceeded our goals by visiting 32 hospitals, donating over 3,500 toys and teddy bears, and raising $43,000 for OMS research!!!

In 2013, we visited 40 hospitals, donating about 6,000 toys and teddy bears, and raised $40,000 for OMS research.

 

Help us reach our goals for 2014 by visiting

http://www.omslife.org/content/2013-omslife-teddy-bear-drive

 

 

November 8 2014 - The OMSLife Caregivers Conference - Texas Children's Hospital, Houston Texas!!!

This regional conference is intended to connect OMS caregivers in southern United States.   A similar regional conference was held in Los Angeles in May.   The conference will be hosted by Dr. Tim Lotze, Texas Children's Hospital and Mike Michaelis, The OMSLife Foundation.   More details to come soon!

 

 

 

 

 

Past Events

 

May 17, 2014 - The OMSLife Caregivers Conference - Children's Hospital Los Angeles!!!

This regional conference is intended to connect OMS caregivers in western United States.   The conference was hosted by Dr. Wendy Mitchell, Children's Hospital Los Angeles and Mike Michaelis, The OMSLife Foundation.   Keynote speakers included Dr. Mitchell, Dr. Susan Turkel, And Dr. Megan Langille.  Approximately 50 caregivers attended the half day event.

 

October 6 - 12 2013 - The Bay to LA Bike Ride for OMS!!!!

Help Team V reach their goal of raising an additional $40,000 for OMS research.
• Team V - We are 4 riders (including Crystal and Naveen Viswanatha, parents of OMS warrior Keira) looking to raise $40K by riding our bikes 500 miles from SF to LA
• Research Grant - We hope to have $100K by end of year, and issue an OMS research grant by Spring 2014
• Scientific Review - The grant will go through the Scientific Review Board at the Pablove Foundation
• Proposals - We want to raise awareness among research community to motivate them to put forth solid proposals
http://stayclassy.org/teamv
 

 

September 23 - October 12 2013 - The 5th Annual OMSLife Teddy Bear Drive!!!

Join us this year as we continue to spread awareness of OMS and raise money for OMS research.  Our goal is to raise $100,000 for OMS research and distribute 10,000 teddy bears and toys to children in 100 hospitals across the country.  Since 2009, we have been collecting teddy bears for hospitals and raising awareness about OMS.
 

 

August 2013 - Rhythm of Life and OMSLife Foundation Fundraiser

The Rhythm of Life Foundation is partnering with The OMSLife Foundation to offer a sweet deal!   During the month of August, if you place orders online at this link, proceeds will go to these two foundations to help fight OMS!    Place your order before September 1 and it will ship to you around September 14.

http://www.sweetasticdesserts.com/omslife.html

 

 

 

August 2013 - Support Brian Cisneros in his ride for OMS research at Boston Children's Hospital -  www.anniesangels.net/donate.html .   Brian will be riding his bicycle from Niagara Falls New York to Hampton Beach New Hampshire to support OMS research at Boston Children's Hospital.  Here is an open letter from Brian.....

Many of you know that our daughter, Audrey, has suffered from an incurable condition for over 3 years now.  Just after her 7th birthday Audrey developed a condition called OMS.  Opsoclonus Myoclonus Syndrome (OMS) is a rare auto-immune disorder that attacks the central nervous system primarily in young children. Left undiagnosed, a child can lose the capacity to walk, talk, or do most tasks that children can achieve. While there is no known cure, researchers are zeroing in on treatments that can consistently stabilize this disease.  Currently, only less than a handful of doctors are looking into the cause and treatment of OMS.  To date, however, there is no known definitive cause, and thus no known decisive cure.  OMS affects about 1 in every 10 million children.

Audrey has endured hospitalizations, 18 months of chemotherapy treatments, regular IV treatments and needs to take several medications daily just to fight this disease.  But she is one of the lucky ones.  She has not suffered from some of the related effects of her illness.  She has rebounded well but still has a rough go of it every day.  I believe that every day is a gift as many do not survive from this disease.  Not once did she complain about her treatments.  She knew that this difficult process was all in an effort to make her better.

In early March, one of the children who suffered from OMS lost his fight.  He was a month shy of his second birthday.  We followed Maddox through his fight with OMS, battling it every day.  He would come back and then it would knock him back down.  But it finally got the best of him.  His spirit and toughness will live on through all of the other OMS kids who are fighting every day to survive and fight this terrible condition.

This is why I have decided to start my own battle against OMS.  This August I will be riding my bike 540 miles from Niagara Falls to Hampton, NH in order to raise money to help fund the OMS Research Fund at Children’s Hospital - Boston.  Although I don’t have the ability to cure OMS myself, I do have the ability to make a difference for Audrey and all the other kids who suffer from OMS.  Audrey’s doctor, Dr. Mark Gorman of Children’s Hospital – Boston, is one of two specialists in the entire country who are dedicated to fighting OMS.  He is leading a research team dedicated to help find a cure for OMS.  All the money I raise from this ride will be donated to Dr. Gorman’s research fund.  My goal is to raise at least $10,000 for OMS Research.

 I’m doing this with the help of my good friend, Bill DaGiau, and his charity, Annie’s Angels.  He is my riding partner and will be making the ride from Niagara Falls with me.

If you would like to help me make a difference in a child’s life that has OMS, then please donate money to my fund for OMS Research.  I will stop at nothing to help my daughter and others who are in the same fight to find a cure for OMS.      

My ride is a 540 mile ride from Niagara Falls to Hampton, NH and will be completed in 7 days.  It will start on Sunday, August 18th and will end on Saturday, August 24th.

If you can only spare $1 or $100 dollars, we will take it.  Every dollar donated goes to research for finding a cure.  Any amount that you give would be greatly appreciated and will make me pedal that much harder.

In order to donate you can go online to the Annie’s Angels website at www.anniesangels.net/donate.html.

Click on the fund drop down box and select “Brian Cisneros – A.A.B.A.” (Annie’s Angels Big Adventure)

Put in your donation amount and hit “continue.”  Follow the checkout procedure and complete the donation.

Or you can mail a donation directly to Annie’s Angels to the address below:

Annie’s Angels Memorial Fund Inc.

8 Jana Lane

Stratham, NH  03885

Please mark on the memo line of your check “Brian Cisneros OMS Ride.”

Annie’s Angels Memorial Fund is a 501c3 organization and your donation is tax deductible.

 

Audrey and her friends did not choose OMS - it chose them. But I have chosen to make a difference in battling OMS and in efforts to find a cure. Please join me in this cause.

 

You can learn more about OMS by visiting www.OMSLife.org.

 

Thank you for your support.  Audrey never quit in her fight against OMS.  I won’t quit in my effort to help find a cure.  No matter how many miles I need to ride my bike.

 

Brian Cisneros

21 Riverside Farm Drive  Lee, NH  03861

(603)765-3333 / BCisneros@comcast.net

 

 

2012 - 2013 - This year and next, Amy and Jason Hancock are "Running over OMS" in honor of OMS warrior Alexa Jennings. Amy and Jason, from Lubbock Texas, are family friends and avid distance runners. They have decided to dedicate their races in 2012 and 2013 in honor of Alexa and her OMS friends. You can help Amy and Jason meet a goal of raising $5,000 in their races. Visit their link to help them "Run over OMS"!!!!

http://www.razoo.com/story/Jason-And-Amy-Hancock-Are-Running-Over-Oms

 

 

June 8, 2013 - Pony up for Pediatrics Gala

The Child Life Specialty Department at Johns Hopkins has selected Jovani Sanchez (Henry and Evie Sanchez) as a representative for their annual Pony up for Pediatrics Gala on saturday, June 8, 2013. The department selects children that are struggling with rare disorders and are "mold breakers". Jovani, an OMS warrior, was one of the children selected.  Whatever monies are collected from the people at Jovani's table are donated to the child life dept in the name of the child and his disorder. Ex Jovani Sanchez... OMS.  Cost is $250 per person.

Please consider giving on behalf of Joey in his battle against OMS!!!!

      https://www.hopkinschildrens.org/pony-up-gala.aspx

 

 

April 19, 2013 - Mother-Son Dance

The Mantz family in Ocala Florida hosted the 3rd annual Mother-Son Dance with proceeds going to OMS research.   The family raised $5,500 for OMS research!!!

 

 

February 2013 -  Join in the "5K Fun Run" during VU's Homecoming Week, as we run to raise support for the Doyle family. The Doyle's have not only impacted my life in a huge way (as my Jr. High/High School Youth Pastors), but have made a huge difference in so many other lives, even as their 7 year old daughter, Mercy, faces such difficult odds. Just a few years ago, a previously healthy Mercy was diagnosed with a rare brain disorder after a bout with mononucleosis. With over $250,000 in medical expenses, we are asking you... to join in this event with your friends and family. Help us raise support for this beautiful family!

This is a family friendly event, so please bring everyone you love!

To RSVP for the event, you must sign up on the following website: http://www.eventbrite.com/event/4055090886#

You can read more about Mercy's story here: http://www.8newsnow.com/story/18636816/henderson-girl-battles-rare-brain-disorder?clienttype=printable

To receive updates on Mercy, "like" the "Pray for Mercy" page.

 

 

November 11, 2012 - Join Michael and Mary Ann Hoffman and Team MikeyMike in their annual Lemon Run. Team MikeyMike has a goal of raising $14,000 for childhood cancer research. The run takes place at Fairmont Park, 4231 North Concourse Drive, Philadelphia PA beginning at 7:30AM. For more information and to make a donation, go to their team site at

http://www.alexslemonade.org/mypage/88720

 

September 2012 - 4th Annual OMS Teddy Bear Drive – Our annual event collects new toys and teddy bears for children’s hospitals and raises research funding for OMS. Our 2012 goal is to provide toys to children at 40 hospitals and raise $25,000 for OMS research. To make a donation or for information on our 2012 teddy bear drive, go to

http://www.omslife.org/content/2012-teddy-bear-drive

 

October 2012 - This fall Naveen Viswanatha plans to ride 450 miles from Boston to Philadelphia to raise awareness and funding for OMS research. It will also remember Naveen's and Crystal's daughter's cancer and OMS diagnosis nearly 2 years ago. Like all of our kids, Kiera has been the source of inspiration in our family, battling countless treatments and hospital visits and doing so with strength and courage. This fall, Naveen hopes to do his part in their fight by raising awareness andfunding for OMS. He hopes to raise $10,000 for this ride and 100% of these funds will be directed towards OMS research!

Please take a moment to support the fight against OMS!!!
http://www.stayclassy.org/fundraise?fcid=208095

 

September 29, 2012 - Alpine Fest raised $1,266 for childhood cancer research!  Michael and Mary Ann Hoffman and Team MikeyMike collected donations in their annual Alpine Fest in honor of their OMS warrior Michael.