Utah Hemp Extract Registrant #1

This morning, Bertrand became the first person in the state of Utah to receive a Hemp Extract Registry Card.

While Bertrand may not receive CBD oil for quite some time, we wanted to show our support for the new law on the very first day.  

The only time I could fit a trip down to the Utah Department of Health was at 9:45am, after school bus pick-up, camp drop-off and some errands, but before school bus drop-off, camp pick-up, and a doctor's appointment.  (And, let's not forget, nursing baby.)

Since the Office of Vital Records opens at 8AM, we did not expect to be the first in line.

There was a bit of confusion from some of the staff when we first arrived, but things were quickly straightened out.  

Since all of our paperwork was in order ahead of time, getting the card only took 30 minutes (and should be faster for subsequent registrants).

The Hemp Registry Instructions on the Utah Department of Health website were very thorough and easy to follow.

The Department of Health is accepting applications via mail or in-person.  

For the first week only, walk-ins are welcome, but appointments will be required in the future.

Please see the Utah Department of Health website for more information.

I broke my no-selfie rule to show Bertrand one of the kind registrars at the Dept. of Health, Leisa Finch, who is helping kids like him get access to these cards.  

A big hip hip hooray for the state of Utah, our representatives and senators, and the fantastic folks at Hope 4 Children with Epilepsy who made this all possible!

Seizure Smart-er

Matthew and I attended the Epilepsy Association of Utah's Seizure Smart Conference.  Given Bertrand's impending travel, we could only attend a few sessions.  The topics were cannabidiol extract, new legislation, and the genetics of epilepsy.  It was an informative and motivating conference.  We were glad we went!  The folks at EAU did a fantastic job, as did all of the speakers.

Look Niki!  We missed you.  You should have been here!  :)

The amazing Heather Jackson with The Realm of Caring.

The fantastic Jennifer May with Hope 4 Children with Epilepsy.

Doose Syndrome Research Study

The Doose Syndrome Epilepsy Alliance in coordination with the Gene Partnership at Children’s Hospital Boston and the Manton Center for Orphan Disease Research is proud to announce a new research project.

This is an exciting step for us. If your child has a Doose syndrome diagnosis (myoclonic astatic epilepsy aka epilepsy with myoclonic atonic seizures) then we want you! This is a new sequencing pilot project for clinical and research use. This initiative will allow for investigators at Children's Hospital, with approved IRB protocols, to submit samples for whole genome sequencing or exome sequencing. An inadequate understanding of Doose syndrome’s underlying causes is the greatest obstacle standing in the way of new treatments and cures for orphan diseases, like Doose syndrome. Many disorders are lumped together under a single diagnostic umbrella, making it difficult for physicians to identify appropriate and safe treatments. Further studies could uncover an underlying genetic flaw and open avenues of research to treat or correct the error.

Instead of individual scientists working in "silos" to understand specific orphan diseases, the Manton Center fosters collaborations between investigators to share ideas, resolve common challenges and attack orphan diseases from multiple perspectives. The Manton Center's environment also attracts new experts and resources to address challenging issues, accelerating the discovery process.

Armed with the necessary research tools, financial support and collective determination, investigators at Children's Hospital have created an interdisciplinary program to narrow the gap that separates the study of orphan diseases from mainstream medical research.

The first step to involve yourself in this critical research is to register your interest with Heather Jackson at info@doosesyndrome.org. Please call directly at 719-491-7340 if you have further questions. From there I will connect you with our contact to ensure that all of the data on our Doose syndrome children is submitted and ran together, which will strongly increase the probability of making links.  This research will be conducted at no cost to you, however the investigators will have to coordinate orders for blood work with your physician.

Best Regards,  

Heather Jackson

Doose Syndrome Epilepsy Alliance

www.doosesyndrome.org 

FAQ's

What if my child has "probable Doose syndrome" or their diagnosis has changed? Please by all means please register.

What if I am not in the US? No problem we will work with your physician to ensure participation.

What if I am not a patient at Children's Hospital Boston? Not a problem, you will consent.

Will I have to travel? No, you will do the blood work at your local lab with orders from the Manton Center.