Can you help with a clinical trial for a treatment for some behaviors associated with Fragile X syndrome?
Zynerba Pharmaceuticals is seeking participants between the ages of 3 less than 18 for a study to evaluate the efficacy and safety of ZYN002, a clear cannabidiol (CBD) gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS). Eligible participants will then participate in up to a 14-week treatment period, where all participants will receive placebo or active study drug.
To learn more or apply, visit https://hubs.ly/H0fSJ7G0.
Shiloh had her first training session last night. It went really well. My mind is spinning with information but Miss Bethany has already shown that she is an incredibly gifted dog trainer. We are ordering Shiloh’s “Service Dog In Training” vest today. So exciting!!! photo credit: @perfectpupstraining
The next big thing is acknowledging how someone decades your junior can actually inspire, drive & mentor you in more ways than those decades your senior
Respect for all those young yet wise little old souls out there that move us daily to build better versions of ourselves as adults.
This #CharityTuesday we want to talk to you about how delighted we were to lend our support to a local fundraising event run by the Adur Special Needs Project (ASNP) by sponsoring legendary pirate of the Seven Seas, Jack Sparrow. ☠️🌊⛵️ ASNP has been supporting local families with children who have special or additional needs and disabilities such as Autism, Fragile X Syndrome and ADHD.
Read the full story using the link in our bio☝🏻
Happy Maximizer Monday! WE HAVE A SPECIAL GIVEAWAY. One 👕 at a time, you have changed the lives of people with special needs. Here’s a thank you for all of your love and support. To win a FREE JM apparel item of your choice, pop-socket, and wristband follow the instructions of our story (also listed below). ONE WINNER WILL BE ANNOUNCED NEXT MAXIMIZER MONDAY!- good luck!! 1. FOLLOW @jakemaxapparel
2. LIKE this post
3. TAG 3 friends
4. COMMENT what you want our next JM product to be
One of the scariest thing for me is when I'm at work and seeing Tino's school nurse calling me. What's harder then being a working mom? Its being a working mom to a special baby. #fragilexsyndrome#mylilxman#hethrewup Please prayers it's nothing just gross chips lol like he says. But nurse said he threw up a lot 😕
HE DID IT!! Run 10 of 10 complete for L'Arche UK! Absolutely amazing work, Flynn Wilson-Hollinshead, you have done brilliantly!! If you haven't yet donated to L'Arche UK, there is still time
L'Arche provides 24 care and support for adults with learning disabilities; assited living for the more independent and respite for their families - it is simply a wonderful, caring charity! Please donate anything you can to help Flynn reach his target!
Every time you purchase a pair of Kirana’s, this little boy is one step (or currently one roll) closer to attending the
@rehabme_srbf private Intensive Collective 3 week program coming up in January 2019. •
With a focus on core muscle strength to assist Ocean to be able to stand & hopefully walk one day, your support of Kirana goes way beyond simply rocking around in cute summer sandals this Summer - you are directly helping me get Ocean the therapy he needs to thrive! •
So choose Kirana and choose to walk for a cause!
Heartfelt thanks for all your support in helping Ocean kick some pretty huge life goals in 2019!
The Magic of Christmas and The Beauty of Innocence #johnnytimelive style 😎✌️
Johnny and I were raised Jewish; however, my uncle, who has since passed, was Catholic and we grew up celebrating Christmas every year. Johnny has seen countless “Santas,” coupled with verification from movies and songs. Thus, he refuses to believe Santa is fake. He has a Christmas Tree/ Hanukkah Bush in his room and writes to the North Pole (me) every year. I am happily Santa and even from California, I make sure Johnny gets his gift. Christmas time in NY is magical, it’s a time where people express ample loving kindness, generosity, and cheer. Johnny embodies the spirit of Christmas, daily. This video made me smile because I know internally Johnny questions if this Santa is real and when we chatted on the phone today, he told me that he remembered that this Santa can’t be real because: “Dani! Santa is still in the North Pole, silly.“ Upon re-watching this I see that despite Johnny’s internal dialogue that Santa is still working hard up north, he cannot help but genuinely smile and feel the awe of the representation of an amazing soul who gifts all and expects nothing in return. This soul is real in Johnny’s world. That is magic.
Merry Holidays and Happy Hanukkah 🕎 🌲 ❤️💚
THANK YOU! Together we raised $1,534 in donations for our Maximizers! (15% of the profit from apparel sales will also be included). Thank you to everyone who came out to our event. And thank you to @finniesnextdoor and @NDspecialolympics for giving us the opportunity to create a special night for a special cause. We feel very blessed to represent each incredible story and individual on our Maximizer team. To us, they are inspirational teammates, friends, family. One shirt at a time, we look forward to continuing our mission with both an amazing team and customers by our side.
Meet a few of my #heros ❤️🧡💛💚💙
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher Reeve
The estimated one billion people living with disabilities worldwide face many barriers to inclusion in many key aspects of society. As a result, people with disabilities do not enjoy access to society on an equal basis with others, which includes areas of transportation, employment, and education as well as social and political participation.
International Day of Persons with Disabilities falls on the 3rd of December each year, with the aim of promoting empowerment, and helping to create real opportunities for people with disabilities. This enhances their own capacities and supports them in setting their own priorities. Empowerment involves investing in people – in jobs, health, nutrition, education, and social protection. When people are empowered they are better prepared to take advantage of opportunities, they become agents of change and can more readily embrace their civic responsibilities.
I honestly don’t know how much Ocean understands of the world around him - it’s a bit of a mystery what words he comprehends or if sentences make sense to him at all.
Since Ocean is a non-verbal little boy, it makes it challenging to know precisely how he’s feeling at any given moment but I’ve learnt to decipher some of his little squeaks and facial expressions. A lot of it is guessing & winging it though. •
Despite the communication obstacles I decided early-on that it is important for Ocean to be surrounded by oodles of happiness and as much positive energy as possible. I try to get him laughing big, hearty belly-laughs every single day. Everyone can benefit from positive energy, whether they talk or not.
I believe that LAUGHTER in particular is one of life’s MOST effective ways to not only build a closer relationship with another person but also to improve the quality of your life. Something happens when two people share a moment of laughter together - energy is exchanged in a way unlike any other. Think about when you last had a massive knee-slapping, tears running down your cheeks, bent-over-dying belly laugh with someone ..... remember that feeling? - an absolutely hilarious and crazy magnetic feeling for those moments.... to the point that days, weeks, months or even years to come you still recall that moment with a little smile & twinkle in your eye. •
I really do hope that Oashie remembers these happy moments we share and I hope that the laughter he experiences daily makes for a more fulfilling & happier life for him.
Today’s the International Day of People with Disabilities and this year’s theme is empowerment, inclusivity and equality...so a fitting moment to share this beautiful shot of my sister Raana (📷 @rob_gould) along with an example (swipe) of what she can achieve when she’s supported to reach her creative potential. Raana’s stunning and intricate mosaic featured on the publicity material for the recent Lancaster Disability Studies conference (achieving her aim of sharing her artwork more widely). Raana, who has the learning disability fragile X syndrome, is a huge influence on the book I’m editing @unbounders, Made Possible. It’s an anthology of essays on success - by talented people with learning disabilities 💪🏼(link in bio ☝🏼) EDIT: and in a stunning coincidence, Raana was wearing purple when this photo was taken..the colour theme of today’s annual event 😊