www.thecutesyndrome.com Open in urlscan Pro
199.34.228.48  Public Scan

Form analysis
1 forms found in the DOM

GET /apps/search

<form class="wsite-search-element-form" action="/apps/search" method="get">
  <div class="wsite-search-element">
    <input class="wsite-input wsite-search-element-input" type="text" name="q" placeholder="Search" autocomplete="off" aria-label="Search">
    <span class="wsite-search-element-submit" title="Search"></span>
  </div>
</form>

Text Content

 * Home
 * About
 * Families
 * Events
 * Research
 * Donate
 * Contact
 * Blog
 * Shop


DO YOU OR YOUR CHILD HAVE SCN8A?

Join our family support group on Facebook!

JOIN OUR COMMUNITY




HELP THE CUTE SYNDROME FOUNDATION FUND SCN8A RESEARCH AND PROVIDE FAMILY
SUPPORT!





CLINICAL TRIALS

--------------------------------------------------------------------------------


Participating in clinical trials is an important way to help
accelerate therapeutic development. Stay up to date about current and future
opportunities below.

PARTICIPATE IN RESEARCH




ANNUAL GATHERING

--------------------------------------------------------------------------------


Connect in person with other SCN8A families and learn about current research by
attending the Annual SCN8A Clinician, Researcher, and Family Gathering each
December.

ATTEND THE GATHERING




RESOURCES

--------------------------------------------------------------------------------


Having a new diagnosis can be overwhelming. We have compiled a list of many
different resources to help you find the equipment and support you might need.

FIND TOOLS & SUPPORT



SCN8A is a rare disorder, caused by a genetic variation in the gene SCN8A. Early
stages of diagnosis and understanding have revealed a broad spectrum of
neurodevelopmental disorders ranging from mild behavior or movement disorders to
severe developmental and cognitive delays. Although epilepsy is often a
significant aspect of this disorder, with the majority of patients developing
seizures early in life, further understanding has revealed that not all
individuals with an SCN8A diagnosis will experience seizures. Meet some our
SCN8A Warriors who live with SCN8A.

Our team at The Cute Syndrome Foundation is working hard to bring SCN8A into the
light, to fund the dedicated and talented researchers working to better
understand it, and to support the families who are affected by this
disorder. But, we can't do it alone: We need your help—your donations, your
volunteer time, and your social media support in order to continue to make big
things happen for this small, but growing, community.

Thanks to our partnerships with Aduje o Rafa, the American Epilepsy Society, and
the Epilepsy Foundation of Metropolitan New York, among others, we have helped
to fund a series of SCN8A research projects including: Dr. John Schreiber's
Access to SCN8A Expert Care Pilot Project, Dr. Ted Cummin's SCN8A Zebrafish
research, and Dr. Michael Hammer's SCN8A Registry. With our Scientific Advisory
Committee we produce an SCN8A Clinician Reference Guide, hold an annual SCN8A
Clinician, Researcher, and Family Gathering, and convene SCN8A Research
Meetings—all with an eye toward improving the lives of those with SCN8A
mutations.
 
In the past The Cute Syndrome Foundation has funded PCDH19 research. Read more
about the PCDH19 research have funded.

Where did the name "The Cute Syndrome" come from? Check out this blog post...


LATEST UPDATES

--------------------------------------------------------------------------------




REGISTER FOR THE ANNUAL GATHERING!

Join us in Los Angeles, CA December 6-7 for the 10th annual SCN8A Clinician,
Researcher and Family Gathering.

LEARN MORE



SCN8A WARRIORS

Make sure to check out our SCN8A Warriors page to see some of the cute faces
behind The Cute Syndrome Foundation!




WHAT'S NEW ON THE BLOG?

--------------------------------------------------------------------------------


Shedding Light on SCN8A: 8th Annual International SCN8A Awareness Day
February 9, 2024, marked an important occasion for the global community,
particularly for those whose lives have been touched by SCN8A, a rare disorder
that often operates in the shadows. International SCN8A Awareness Day, observed
under this year’s theme #IfYouOnlyKnew, served as a poignant reminder of the
challenges faced by individuals affected by this condition, which impacts less
than 1,000 people worldwide...

READ MORE



FOLLOW US ON INSTAGRAM @THECUTESYNDROME


thecutesyndrome
TCSF extends a huge thank you to @caprinow for hosting a fundraising event in
honor of SCN8A angel Mae Johnston, granddaughter to their esthetics teacher
Linda. This special event, which included a bake sale, raffles, style-a-thons
and more, raised $3,400 for The Cute Syndrome Foundation! Thank you so much to
the staff, volunteers, and local community for making this event a success. We
are so grateful for your efforts!

#scn8aawareness #scn8astrong #scn8aangel
@thecutesyndrome21 giu 2024

Share


Read more
Read more
thecutesyndrome
Wishing the SCN8A community a happy, safe, and fun summer!

#scn8astrong #scn8awarrior #scn8a #thecutesyndrome #summerfun #happysummer
@thecutesyndrome20 giu 2024

Share


Read more
Read more
thecutesyndrome
Our final Meaningful Change session of 2024 was the most difficult topic yet,
focused on advance care planning and end of life. These conversations are
challenging to have, but important for rare disease caregivers to consider. The
full recording is now available at thecutesyndrome.com/meaningfulchangeseries
and on our Youtube Channel.
@thecutesyndrome19 giu 2024

Share


Read more
Read more
thecutesyndrome
Please join us in remembering Mack’s birthday 💜

“Today we celebrate Mack, who would have been 2 years old. Mack was the light of
our lives and brought so much joy to everyone around him. Happy Birthday
Mackaroni, we love you so much, we wish you were here celebrating with us.”
@thecutesyndrome5 set 2024

Share


Read more
Read more
thecutesyndrome
The SCN8A community is at a loss as we share the passing of Antonella. Please
keep her family in your thoughts during this difficult time. As a community, we
promise to always fight in your honor, Antonella. 💜
@thecutesyndrome4 set 2024

Share


Read more
Read more
thecutesyndrome
Please join us in wishing Oliver a happy birthday! 🎉

“Wishing Oliver a very happy 12th birthday!”

#scn8astrong #scn8a #scn8awarriors
@thecutesyndrome4 set 2024

Share


Read more
Read more
thecutesyndrome
Encouraging news for the SCN8A and SCN2A communities. Today, Praxis Precision
Medicines has announced positive topline results from the EMBOLD study in SCN2A
and SCN8A developmental epilepsies. From their press release:

Placebo-adjusted monthly motor seizure reduction of 46% during double-blind
period

Over 30% of patients achieved seizure freedom status while on relutrigine

Meaningful gains observed in alertness, communication and seizure severity

75% reduction in median seizure rate seen for patients in the long-term
extension

Registrational phase of the EMBOLD study for SCN2A and 8A initiated

_______________________________________________

“I can’t help but smile today as I fully absorb the press release from Praxis
Precision Medicines about the positive phase 2 EMBOLD study topline results for
the drug relutrigine. These remarkable findings show significant improvements in
seizure reduction and severity, along with encouraging signs in clinical
assessments, including improvements in disruptive behavior, communication, and
alertness. For families without any approved treatment options, this drug brings
profound hope and could potentially change the course of disease management. I’m
eager to see the next steps unfold as we continue to work together as a
community for a better tomorrow.”
- Kacie Craig, Executive Director, The Cute Syndrome Foundation

@praxismedicines #scn8astrong #wechoosehope #scn8a
@thecutesyndrome3 set 2024

Share


Read more
Read more
thecutesyndrome
Please join us in remembering Everleigh’s birthday! 💜

“Wishing everleigh a very happy heavenly 4th birthday. We miss you each and
everyday. Have a wonderful day up there with nana papa and great grandma. Love
you everleigh georgiana rose matteoli”

#scn8astrong #scn8a #scn8awarriors
@thecutesyndrome2 set 2024

Share


Read more
Read more
thecutesyndrome
Have you joined the MOVEment yet? ➡ runsignup.com/TCSFrace

Sign up today for our Virtual Race and walk, run, roll, or stroll for SCN8A
awareness and funding this fall! Register by September 13th to receive your
optional long-sleeve performance shirt in the first shipment.

Have questions or need help? Send us a message and a TCSF Volunteer will be
happy to connect!

#virtualrace #runforacause #walkforacause #5k #1mile #allabilities #getmoving
#scn8astrong #scn8a
@thecutesyndrome1 set 2024

Share


Read more
Read more
Powered by Curator.io


Past Annual Reports

Past PCDH19 Efforts

Privacy Policy

The Cute Syndrome Foundation
PO Box 842 Ozark, MO 65721


The Cute Syndrome is registered as a tax-exempt organization under IRS section
501(c)(3).
Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved



 * Home
 * About
 * Families
 * Events
 * Research
 * Donate
 * Contact
 * Blog
 * Shop

 * Back
 * About SCN8A
 * About Us
 * Partner Organizations
 * Volunteers
 * Annual Report

 * Back
 * Join our SCN8A Community
 * Connor James Smith Patient Assistance Grant
 * Educational Videos >
 * Resources >
 * CUTE Connections Grant
 * SCN8A Warriors
 * Virtual Memory Wall

 * Back
 * Educational Videos >
 * Annual Gathering Event Recordings
 * Cheers to a Good Life
 * Clinical Trial Readiness Series
 * Family and Researcher Roundtable Series
 * Meaningful Change Series

 * Back
 * Resources >
 * Caregiver Support
 * Reference Guide
 * Shareable Graphics

 * Back
 * Annual SCN8A Clinician, Researcher, and Family Gathering >
 * Researcher Roundtable
 * Awareness Day
 * Layla: The Festival of Mark Making
 * Virtual 5k

 * Back
 * Annual SCN8A Clinician, Researcher, and Family Gathering >
 * CUTIES Awards

 * Back
 * Clinical Trials
 * Research Grants
 * SCN8A Registry




 * About SCN8A
 * About Us
 * Partner Organizations
 * Volunteers
 * Annual Report

 * Join our SCN8A Community
 * Connor James Smith Patient Assistance Grant
 * Educational Videos >
    * Annual Gathering Event Recordings
    * Cheers to a Good Life
    * Clinical Trial Readiness Series
    * Family and Researcher Roundtable Series
    * Meaningful Change Series

 * Resources >
    * Caregiver Support
    * Reference Guide
    * Shareable Graphics

 * CUTE Connections Grant
 * SCN8A Warriors
 * Virtual Memory Wall

 * Annual SCN8A Clinician, Researcher, and Family Gathering >
    * CUTIES Awards

 * Researcher Roundtable
 * Awareness Day
 * Layla: The Festival of Mark Making
 * Virtual 5k

 * Clinical Trials
 * Research Grants
 * SCN8A Registry

 * Empty Cart

Subtotal: $0.00
Checkout
Donate

Donate