Newsletter Archives

March/April 2015 Ohtahara Syndrome Community Newsletter

posted Mar 13, 2015, 8:54 PM by Aarons Ohtahara

Big plans for our annual conference! This year we will join our families on the west coast for our Ohtahara Syndrome Conference and Family Gathering. We are excited for another opportunity to meet families and to bring together the families that are able to attend. Please be praying for our event and those attending as we all travel and come together.

Thank you again to Rebecca for another beautiful article. She continues to bless us with her work and is a great addition to our newsletter. Read on for more!

We celebrated Rare Disease Day 2015 in South Dakota. A great event and one we enjoy attending - four years now!

Jan/Feb 2015 Ohtahara Community Newsletter

posted Jan 6, 2015, 9:04 PM by Aarons Ohtahara

Happy New Year and welcome to another year of features and stories from the Ohtahara Community Newsletter.  We pray this year is a happy and healthy one for you all. 

We begin our 2015 newsletter with a recap of Aaron's Ohtahara 2014 year in review.  As a recap, we are sharing here our photo announcing the arrival (and much antipaticed) World Ohtahara Syndrome Awareness Day in 2014. We had a great year and feel 2014 brought even more awareness to Ohtahara Syndrome than before!

We would like to thank Kristen for sharing Tyler's story with us and for Tyler's family's continued support and effort to bring awareness to Ohtahara Syndrome.

Nov/Dec 2014 Ohtahara Syndrome Community Newsletter

posted Nov 5, 2014, 9:12 PM by Aarons Ohtahara

Happy National Epilepsy Awareness Month! Day 6 and we are so happy to be honoring our children and all those diagnosed with Epilepsy. If you have not already, check out our Facebook page as we are sharing #beyondthediagnosis - photos of some of the children with Ohtahara Syndrome and what their parents/families would like you to know about them.

Our newsletter this month is full of great ways to be involved! We start with World Ohtahara Syndrome Awareness Day (#WorldOSday) on November 15 and the new REN (Rare Epilepsy Network) is now available for families to register and help advance research into rare epilepsies. This is a project that Aaron's Ohtahara has been working on with nine other rare epilepsy organizations and has been such an honor! We are excited to see it growing and open for registration.

Rebecca once again shares her wisdom and beautiful family with us as she shows us just what Keely (and perhaps your child to) can do with adapted communication. Keely amazes and brings tears as she communicates with her family. I for one would feel so blessed to see her communicate so well! Of course I would be crying, but worth it!

Don't forget to check out the birthday list too. We wish everyone celebrating a Nov and Dec birthday joy and happiness! Happy Birthday to the wonderful children that continue to write their own stories and bless us daily! Our newsletter is attached, please check it out!

(Photo: Savannah, photo credit Linda Cox)

September/October 2014 Newsletter...

posted Sep 12, 2014, 6:27 AM by Aarons Ohtahara   [ updated Sep 12, 2014, 6:28 AM ]

The Ohtahara Syndrome Community Newsletter is out!  This update is bringing you updates on some of the children that have been featured in previous newsletters to include some really adorable pictures!  Mark your calendars for November Epilepsy Awareness Month.  We also mention World Ohtahara Syndrome Awareness Day and our hope that this can be a reality soon!

July/August Ohtahara Community Newsletter...

posted Jul 15, 2014, 10:16 AM by Aarons Ohtahara   [ updated Jul 15, 2014, 7:07 PM ]

After a wonderful Ohtahara Syndrome Conference and Family Gathering, we are bringing you some conference highlights and photos.  Rebecca has also contributed to our newsletter by sharing her family's experience on Keely's Make A Wish trip.  Elmo made Keely smile so much, she is such a happy girl!! 

Please stay tuned for our conference videos to be uploaded soon onto our YouTube channel

We would like to thank everyone who attended the conference and a very big thank you to all the speakers who attended and spent their day with us. We learned so much and thank each and every one of them for sharing their experience and expertise with us!!

May/June 2014 Ohtahara Newsletter...

posted May 12, 2014, 11:29 AM by Aarons Ohtahara

Our latest Ohtahara Syndrome Community Newsletter is now available!  Thank you for continuing to read our newsletter.  We hope everyone had a wonderful Mother's Day.  This newsletter brings information about our upcoming conference as well as a guest article from Rebecca.  We appreciate the input she has continually given/added to our newsletter! Thank you Rebecca!  We also note about Brianne's trip to Houston for the Catastrophic Epilepsy conference.  Complete notes for that event can be found here...

The photo is of the Ohtahara Families that joined  together in Houston for the conference.  It was wonderful to see everyone and meet two beautiful children, Zayden and Caroline. 

March/April 2014 Ohtahara Syndrome Community Newsletter...

posted Mar 5, 2014, 11:09 AM by Aarons Ohtahara

What a great start to our year of awareness events.  This newsletter we have photos of our booth at the Rare Disease Symposium as well as our feature child. Her name is Savannah, she is adorable and has quite the story like all of our children!  We also have great news on what our organization is working on!  Check out or newsletter for more information!

Jan/Feb Ohtahara Syndrome newsletter...

posted Jan 6, 2014, 1:19 PM by Aarons Ohtahara

Happy New Year!  The year always seems to go by quickly, didn't we just celebrate the boys' birthday?  Let alone have our first ever Ohtahara Gathering and Conference?  We had a great year and look forward to new adventures.  The highlight of this newsletter is little Leeroy!  He is a beautiful angel and missed so much.  Thank you Stephanie for sharing Leeroy with us, he is always remembered!!  Check out the file below for our newsletter!

November/December Ohtahara Community Newsletter

posted Nov 1, 2013, 2:33 PM by Aarons Ohtahara   [ updated Nov 1, 2013, 3:30 PM ]

Welcome to our Nov/Dec Ohtahara Syndrome Community Newsletter.  November is Epilepsy Awareness Month, please read and find out how we are spreading awareness! 

In honor of Epilepsy Awareness Month, I have decided to complete 30 acts of kindness. For the past couple of weeks I have been making a list of organizations to donate to or volunteer at, as well as kind things to do for people- with spreading awareness about Epilepsy and Ohtahara Syndrome in mind. Today was the first day - I sent flowers to the boys' teachers, thanking them for their support and help/understanding. They loved them! I also made purple ribbons that I am wearing and have handed out today to a handful of people (already handed out 12 purple ribbons!) Then this morning I brought donuts to a company that has been very supportive and kind to my family. We are so appreciative of the kindness we have received. Please follow us on twitter or like the page on facebook to follow my 30 acts of kindness adventure. #kindnessforawareness thanks everyone!!  

September/October 2013 Newsletter

posted Sep 16, 2013, 8:58 PM by Aarons Ohtahara

Welcome to Fall and Back to School! This is our back to school issue!  We hope you find helpful information on IEP assistance.  Rebecca has also made a wonderful contribution to this newsletter with her article, Change!  Have a great school year! 

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