The Cute Visits Super Eric and Super Chloe
Esmé was able to visit some of the members of the Super Cute Troop in mid-August. Super Eric and Super Chloe are a brother and sister team in Canada who have celebrated their last three birthdays by asking for donations to The Cute Syndrome in place of gifts!
Super Esmé was so very excited to finally get to meet them and thank them for helping us, as Eric says, "get good medication for Esmé!"
Read more about Super Eric, Super Chloe, and their parents here.
The Cute Syndrome's 2013 Annual Report is here!
The Cute Syndrome is a 501(c)(3) organization and a GuideStar Exchange Gold Participant
Marinus Pharma will be pursuing a PCDH19 trial with their drug Ganaxolone.
We are so very proud that the hard work of our partner organization in Italy, Insieme per la ricerca PCDH19 - ONLUS, has contributed an upcoming drug trial by Marinus Pharma with a new medication: ganaxolone. This trial is the direct result of Insieme per la Ricerca PCDH19's funding of research over two years and their persistence in organizing the medical, research, and pharmaceutical community. We are so grateful for their work.
Esmé Raises Awareness of PCDH19 Epilepsy with Novartis and Photographer Brent Stirton
Esmé spent several days recently with world-renowned photographer Brent Stirton, who was documenting her daily life--from therapies, to doctors visits, to tube-feeding, to playing with her grandparents--for the Novartis annual report. Not only did she have a fantastic time having her photo taken, but she's very happy to be able to help raise awareness for PCDH19 Epilepsy!
Check Out TCS's PCDH19 Awareness Partnership with Positive Exposure
Check out our gallery of photos up at the Positive Exposure website! These are from our photo shoot last fall. http://positiveexposure.org/gallery/#ad-image-1
We are thrilled with our partnership with Positive Exposure, a not-for-profit dedicated to redefining beauty (www.postiveexposure.org). Rich Guidotti is a former high fashion photographer who founded Positive Exposure, an organization dedicated to taking photos of people with genetic differences.
For more about what Positive Exposure and Rick do, check out this coverage on UpWorthy.
The Cute Syndrome Announces PCDH19 Epilepsy Zebrafish Matching Challenge
It may sound a bit odd, but currently one of the best hopes for finding safer, more effective treatment for PCDH19 Female Limited Epilepsy (FLE) is swimming around in a fish tank in Boston. It is a little tiny fish called a zebrafish that Dr. Annapurna Poduri of Boston Children’s Hospital is studying to help find treatments for PCDH19 FLE.
The Cute Syndrome Foundation is on board to help this research happen by committing $25,000 to support Dr. Poduri's promising research. We have an anonymous donor who has signed on for a $10,000 matching grant in honor of our first anniversary to help us raise these funds. Help us reach our goal of $25,000 for this research. Read more about the research we are helping to fund here.
The Cute Syndrome Announces $135,000 Research Grant
The Cute Syndrome, with our partners Insieme per la Ricerca PCDH19, is thrilled to announce the first internationally funded PCDH19 research grant competition funding a 100,000€/$135,000 two-year research grant. This grant has only been made possible by the tremendous generosity of our donors. When we began The Cute Syndrome almost one year ago our goals were rather modest. We wanted to contribute to the work our partners in Italy were doing funding PCDH19 research, and we wanted to help raise awareness of PCDH19 by telling Esmé's story. The support we have received over the last year has been nothing short of amazing, allowing us to exceed our initial funding goals and offer such a significant grant amount while still in our first year. Thank you for your support, and stay tuned as we will gear up for our one-year anniversary!
The Cute Syndrome Selected for Environment/Health Category for The Capital Region Gives Promotion
The Cute Syndrome has been nominated for The Capital Region Gives Promotion for a chance to win a $5000 grant and $5000 worth of advertising in the Times Union Newspaper. You can vote for The Cute Syndrome once per device until Monday February 24th at 5pm EST using this link: http://blog.timesunion.com/giving/promotion-voting-continues-in-environmenthealth-category/2007/
Thank you for your help!!
The Cute Syndrome in the News!
We had a chance to speak with WNYT News Channel 13 reporter Benita Zahn about Esmé and The Cute Syndrome. They put together a lovely story about us!
Photo Shoot with Tracey Buyce Photography
This week we were so lucky to have Saratoga Springs, NY photographer Tracey Buyce volunteer her time to do a photo shoot with Esmé for The Cute Syndrome and our partners at TinySuperheroes. The photos are just stupendous. Tracey truly captured Esmé's spirit and her life.
Take a peak here.
The Cute Syndrome Becomes a "Friend" of Rare Disease Day
The seventh international Rare Disease Day is coming up on February 28th, 2014. Hundreds of organizations from more than 70 countries are joining forces on this day in order to raise awareness for rare diseases, like PCDH19 Female Epilepsy, that when thought about en masse, are not so rare.
This year's slogan “Join Together for Better Care” is an important theme for us at The Cute Syndrome. We know that so little is accomplished alone, and we are committed to working with other groups and organizations to support not only PCDH19 awareness and research, but to raise awareness of of children battling rare disorders in general.
Learn more about Rare Disease Day here.
Nov 9th is the first annual PCDH19 Epilepsy Awareness Day!
You can help celebrate PCDH19 Epilepsy Awareness by sharing a a photo of yourself with a purple balloon (and your giraffe print ribbon too!!) on The Cute Syndrome Facebook page. When you visit our page you can also find a profile picture and other fun things to share in celebration of the first annual PCDH19 Epilepsy Awareness Day!
The Cute Syndrome attends the PCDH19 World Conference in Rome
TCS's partners Insieme per la Ricerca PCDH19 (Together for PCDH19 Research) held their second annual PCDH19 World Conference. TCS was very pleased to attend this important event this year where we learned so much about the current research into PCDH19 happening around the world. We heard papers from leading researchers around the world at the conference and had the tremendous opportunity to speak with many of them at length about the future of PCDH19 research, potential collaborative efforts in gathering data about this disorder, and how best to maximize our results in granting funds. You can read more about the conference speakers and their papers here.
We are so grateful for the hard work our partners did to bring all of these researchers together to help our girls!
The Meinweiser Family Fundraiser!
Brian Meinweiser, is running a 50k on December 21, 2013 in honor of his daughter Izzy and the other girls with PCDH19FLE, and is asking for donations in Isabel’s name to The Cute Syndrome. Read More...
The First Annual Catch The CUTE Fundraiser Raises Over $15,000!
On August 25th, 2013 we celebrated the First Annual Catch the CUTE Cocktail Party and Silent Auction. We had a beautiful spread of local food catered by chef Andrew Plummer, a number of fantastic auction items donated by local businesses, and about 100 guests. Our fantastic volunteers kept the party running smoothly! We hoped to raise $15,000 with the event--and we exceeded that goal, bringing our total raised since May to over $42,000!
Looks like a lot of people caught the CUTE!
The Cute Syndrome PCDH19 Awareness Ribbons
Check out our new Cute Syndrome PCDH19 Awareness Ribbon. Wear the giraffe print proudly! You'll see people will want to know about it and you'll be able to tell them about Esmé, The Cute Syndrome, and PCDH19 Female Limited Epilepsy! Make a donation today to receive yours!
The Cute Syndrome has made a new video about Esmé's friends with PCDH19 FLE
The Cute Syndrome's Official Video About Esmé and PCDH19
Two of Esmé's CUTE Friends, Eric Savoie and Julius Lorentz, have come up with some fun ways to help support The Cute Syndrome and help raise money for PCDH19 Female Limited Epilepsy Research!
Eric will be celebrating his birthday on August 6th. Instead of having his friends bring him gifts to his Batman-themed party, he is asking them to donate to help support The Cute Syndrome and PCDH19 Research. Yay Eric! You are quite the wonderful little boy!
Julius has been friends with Esmé since she was born. He painted her one of her favorite pictures. Julius (with help from his parents) will be running The Cute Farm Stand this summer with all of the proceeds going to benefit The Cute Syndrome and PCDH19 Research. Thank you Julius!
Esmé sends a big thank you to her wonderful buddies! And I know Esmé has a special CUTE treat in mind for each of you!
A Meeting with Insieme per la Ricerca PCDH19
Last week Esmé and I had the opportunity to sit down with Paola from Insieme per la Ricerca PCDH19, the Italian foundation dedicated to raising money for PCDH19 research.
We had a wonderful time getting to know each other and talking about our girls. Paola and I discussed how our two organizations can work together to maximize the benefit to PCDH19 research and our girls.
We hope to co-fund at least one (but maybe more!) research grant this fall. Insieme per la Ricerca PCDH19 has been very successful in raising funds and awareness. We are so happy to call them our friends! And together we can do even more.
Here is a picture of our visit together. What fun we had! Paola is one of our family now!