CureBatten

Hi! I am a couple days late recognizing Batten Disease awareness day! I am still coming out of the newborn fog, after giving birth to our son, almost 6 weeks ago. It has been a joy, welcoming a new life into our family, it has brought smiles to Charlotte and Gwen's faces and new purpose and hope for our family. The sliver lining of this COVID quarantine has been quality time as a family of five! Having a newborn has also brought emotions of uncertainty and sadness for th...e quality of life that Batten Disease took from my girls. Knowing what I know now about all things neurological, I see firsthand the neuronal connections being made in my son, the newborn signs of startle reflex, moro reflex and clonus. Charlotte too shares these reflexes on a daily basis, most go away at 8-10 weeks and of course with the neurological interruptions that present with Batten Disease, we see things in Charlotte at almost 10 years old. While we may have altered the trajectory of this horrible disease, the outcome is still unknown and that is quite unsettling as a parent. We at Cure Batten continue to work hard and finding alternative, complimentary treatments for Batten Disease, we have slowed down our fundraising due to the climate in our world right now but under new leadership, plan to revitalize and revamp our foundation, programming and funding efforts. We are no longer with Giving Back Fund and are operating as a stand alone 501c3. We will never stop fighting for our children and others like them. Thank you to all of our supporters, donors, family and friends for continuing to follow our journey, support the work our foundation does and hope for a cure. Our thoughts are with those children who's battle was lost against batten disease, those struggling with the daily challenges associated with Batten Disease and those newly diagnosed. We think about the families, and know firsthand the daily battle that you are up against and the physical and emotional pain that you experience as parents and caretakers. We are with you! #battendiseaseawareness #curebatten #neverstopfighting #battendisease2020 #battenday2020

Great news for the Batten community. https://www.prnewswire.com//polaryx-therapeutics-receives-

This girl turned 9 yesterday! We at Cure Batten know how important hitting these milestones are, every day, every week, every month and every year are blessings! Thanks for all the birthday wishes and all the support!

Thanks to all that have purchased tickets for tomorrow's even benefiting the @thegrayacademy, we look forward to seeing everyone!

Only a few days left to support children with special needs @thegrayacademy Thanks to all that have bought tickets or donated a ticket to a family in need. If you haven't been to the NEW CAYTON Children's Museum Cayton Children's Museum , this is your chance to check it out AND support a local charity! Thanks to some generous families, we do have some comped tickets for those larger families and families in need, please private message me if you would like to attend.

https://battendiseasenews.com//gene-therapy-prolongs-life/

Excited to share (a day late) our new Family Feature! Love this family! Family Feature Friday! The mission of The Charlotte & Gwenyth Gray Foundation is to improve and save the lives of all children impacted by Batten disease. Each month, we will be sharing the story of a family whose lives have been affected by the disease....Continue reading

We are super moved and proud of our friend Julia Vitarello. Like Kristen and Gordon, Julia was given no hope but had all FIGHT for her daughter Mila. Like Charlotte, Mila was treated in 1 YEAR from diagnosis to treatment, a drug that was specifically tailored for her! Kristen knew from the moment she spoke to Julia, that she was going to make miracles happen. Cheers to Dr. Yu at Boston Children's Hospital and Charles River Labs for thinking outside the box and collaborating, it is the only way science moves forward and miracles happen. #curebatten #alwayshopeful #milasen

The Gray Academy tickets are now on sale for our first family fundraiser. Please click on the link to purchase tickets. Hope to see you there. https://thegrayacademy.org/event/2019fallfamilyfundraiser/

Excited to announce our first annual family fundraiser for The Gray Academy The Gray Academy . For all local to Los Angeles, the Zimmer Museum relocated to Santa Monica as a new an improved children's museum! We will have fun for all ages! Hope you can make it!

Family Feature Friday! The mission of The Charlotte & Gwenyth Gray Foundation is to improve and save the lives of all children impacted by Batten disease. Each month, we will be sharing the story of a family whose lives have been affected by the disease. How can you help? Share our stories with your community or on social media (and tag @curebatten #curebatten).... Donate! Every dollar counts. Click here or mail a check to 5757 W Century Blvd, Suite 410, Los Angeles, CA 90045. Volunteer your time and/or ideas to our cause. Email us at [email protected]. Their Story: Our daughter Mary was born May 19, 2009. Mary was 11 weeks premature and spent two-months in the hospital. She lagged behind her peers when it came to walking and talking abilities, but the doctors attributed it to her premature birth. At two years old, Mary began to walk and started to catch up with children her age. However, at 3 1/2 years old, we noticed Mary had difficulty walking. Initially, we thought it might be her vision, so we took her to an ophthalmologist as well as an orthopedic specialist. By 2014, Mary starting having seizures and three months later her doctors recommended genetic testing. Mary was diagnosed with late infantile-NCL batten disease CLN6 and we were informed that Mary was the only child that had this rare disease at that time. We were devastated when Mary was diagnosed with this rare disease. The geneticist told us that this disease was a neurodegenerative brain disease that it would leave our daughter blind, immobile, cognitively impaired, and, eventually, dead between the ages of six and 12. The doctors said there was also a one in four chance that our son John would test positive for CLN6. When his test results returned, we were devastated once again. My mother-in-law came across Kristen Gray discussing her children with the same disease as Mary and Johnny while watching TV one night. I emailed The Charlotte & Gwenyth Gray Foundation and Kristen Gray responded, devastated to hear our news. She knew exactly what we were feeling. She forwarded our information to the doctors that she was working with and here we are today on the brink of a miracle, our hopes and expectations that a cure will be found soon. Our children's lives depend on it. Time is running out and we only have a small window of opportunity to find a cure for this horrible disease. We are asking for your help to fund additional research. Thank you from the Smith family.

If you live in the Santa Monica area, are in need of some new fall finds, come shop Bloomingdale's and enjoy delicious bites by Thyme Cafe and Market and cocktails. Next Thursday, September 19! A portion of the proceeds will go to The Gray Academy The Gray Academy ! https://localmercatoshopfallfashion.splashthat.com/