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Rett Research in a Time of Crisis

April 2, 2020Community, Research

Dear Fellow Families, The events of the past several months have magnified how small our world is, how interconnected we all are, and how pivotal science is to our health and daily lives. I hope that each of you reading this, and your loved ones, are in good health and…

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Talk To Your Doctors

November 14, 2018Community

If your daughter (or son) is approaching 18 years old, there are a couple of matters that you must handle. While most people know that when our children turn 18 years of age, they are no longer ours, but they are their own person. For me, that meant working with…

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We’re in This Together

June 12, 2018Community

Last March we announced an ambitious goal at RSRT to raise $33 million over three years to support our strategic research plan, Roadmap to a Cure. This is no arbitrary goal. Every dollar correlates with a research budget that aggressively moves the needle on potentially curative approaches. I’m excited and…

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Home Team Advantage

March 9, 2018Fundraising, Community

I’m not a big football fan, but I admit I got caught up in the Eagles’ recent win. I grew up in a suburb of Philadelphia and I still live in the area, so how could I not? They’re my home team. (Apologies to Pats fans.) It got me thinking…

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The Man Behind the Brand

January 20, 2018Community

Hi there! A few of you reading this may know me from working on projects together but I’m sure many of you have no idea who I am or what it is that I do so I’m taking this opportunity to introduce myself and let you know what I do…

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Inspired by You

January 12, 2018Research, Community

I’ve always been drawn to human diseases and genetics. When I first really learned genetics in school, I was completely fascinated and excited by the fact that we had identified and begun to decipher the instructions for human cells. We were holding the keys to cellular function, health, and ultimately…

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October: Rett Awareness and So Much More

October 10, 2017Community

I think most of us Rett parents compartmentalize our life events according to “pre-Rett” and “post-Rett”, I know I do. In my “post-Rett” life October carries significant importance. First and foremost my daughter Chelsea was born in October of 1996. October 10th to be exact. Today she turns 21 years…

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How Rett Changed a Granddad

October 4, 2017Fundraising, Community

Like other grandparents who faced a diagnosis of Rett Syndrome, I was initially devastated. My granddaughter Magnolia would not have the life I dreamed for her. I wouldn’t see her walk down an aisle or celebrate those typical life events most grandparents get to savor. The impact on my son,…

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Twice the Heartache…Twice the Love

September 9, 2017Community

I have a soft spot for Rett grandparents. Having witnessed my own parents come to terms with Chelsea’s diagnosis I saw firsthand just how painful and raw that journey was. In a sense grandparents bear twice the pain that parents do. They ache for their children and they ache again…

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2016: A Year in Review

July 19, 2017Fundraising, Community

Thanks to our almost 9,000 donors we raised a record amount in 2016. We’re putting that money to work on behalf of everyone struggling with Rett Syndrome and related MECP2 disorders. We invite you to view our infographic. Thank you to all our supporters! You can also download the infographic here.  …

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Finding the Words

June 26, 2017Fundraising, Community

I told my daughter, Eleanor, the news. I had just put her in bed for the night. Her arms had stopped moving and she was breathing quietly. She stared into my eyes with that intense look that only the parents of a daughter with Rett Syndrome can understand—intelligent, lucid, expressive…

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Key Questions to Ask When Considering Clinical Trials

February 28, 2017Research, Community

We live in exciting times. It seems like almost every day, breakthrough scientific discoveries provide novel insights that could result in new and better ways to treat your children. These advances are clear signs of progress and reasons for optimism. Companies are leveraging these scientific insights to initiate clinical trials…

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Of Mice and Rett: Novel Therapeutics & Community Support

January 27, 2017Research, Community

You — the parents, grandparents, and families of children with Rett Syndrome — know more than anyone the devastation that Rett brings and the frustration of not having medications to address the onslaught of symptoms your child faces every day. While I don’t have a child with Rett, I am…

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Small Town, Big Heart

January 4, 2017Fundraising, Success Stories, Community

Hi everyone, so this is my very first blog! Ugh, Rett Syndrome! So after going through day-to-day life with Rett syndrome, you sit back and think, well now what? Do we just sit here and wait for a cure? For our family, sitting back and doing nothing wasn’t an option. We…

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The Joy and Ache of the Holidays

December 20, 2016Community

I want to join Monica and our trustees and staff in saying how hugely grateful we are at RSRT for support from so many people. From families that spearhead events, to parents and others who do RettGive campaigns, to state and international Rett organizations and those who work so hard…

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Rett Syndrome Awareness Month 2016

October 7, 2016Community

Rett Syndrome Awareness Month is here! It’s important to spread the word about what Rett is and what causes it; how strong and amazing our daughters, granddaughters, sisters, and nieces who struggle with Rett and related disorders are (although very rare, boys can also have Rett and they and their…

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A Quick Look Back and a Major Look Forward

September 26, 2016Community

RSRT launched eight years ago yesterday. Anniversaries can be an opportunity to look back at accomplishments, but also to define where and how we move forward. We have come a long way in these eight years. Rett research is in a much more promising and exciting place than it was…

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Ask Gaby: Episode 1

August 2, 2016Community

We believe all girls and women with Rett have vibrant minds, but the disorder robs them of the ability to express themselves.  One young woman, Gaby Valner, has been very fortunate to have retained more skills than most.  With tremendous effort, she is able to type her thoughts and ideas. Gaby uses…

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Rett Give: Are You In?

July 27, 2016Fundraising, Community

Since it was launched last month, RettGive, RSRT’s new crowdfunding platform, has resulted in more than $60,000 contributed to research. Thirteen families from around the U.S. and the world have started campaigns. I’d like to thank these families for taking action. Beyond raising critical funds for the research, these campaigns also…

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The Boys of Rett

July 26, 2016Research, Community

While it’s true that Rett Syndrome is mainly a girls’ disorder, it’s not true that boys can’t have it. In fact, those of us active on Facebook have probably noticed an increasing number of parents whose boys have been diagnosed with Rett. I suspect it has to be especially hard…

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Alba Tull Joins RSRT Board of Trustees – Press Release

July 25, 2016In The News, Community

We’re pleased to announce that Alba Tull has joined our Board of Trustees. Additionally, The Tull Family Foundation, the funding agency of Alba and her husband, has pledged a gift of $500,000 to RSRT. Inspired by a friend’s two-year-old daughter who was diagnosed with Rett, Alba was moved to help RSRT in its…

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Ask Dr. Carpenter: Episode 1

July 20, 2016Research, Community

On July 11th we solicited questions on our blog for our Chief Scientific Officer, Randy Carpenter. A number of parents asked questions about their daughters’ symptoms and medications. Please note that Dr. Carpenter is not a Rett clinician and is not able to give medical advice on the website. Responses…

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Ask Dr. Carpenter

July 11, 2016Community

RSRT’s Chief Scientific Officer, Randy Carpenter, has been on the job for just over 4 months. During this time he has immersed himself in everything Rett doing a lot of reading, traveling and meeting with the scientific and clinical community as well as industry executives. Dr. Carpenter’s background in medicine and drug…

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If You’re Going Through Hell, Keep Going

June 8, 2016Community, Success Stories

Seven years ago, I laid on my bathroom floor and thought about never getting up again. It was one of those mornings any parent of a child with Rett Syndrome will know well; the ones where just getting everyone ready for school and out of the door demands the determination…

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Crowdfunding for Rett

June 6, 2016In The News, Community

We’re tremendously excited by the research progress we’ve achieved through the enthusiastic support of our tenacious community. More than 50% of RSRT’s donations come to us via events that are spearheaded by affected families and their friends.  We recognize however that holding events isn’t always feasible for families and loved…

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The Day My World Stood Still

May 26, 2016Community

It started out as a pretty good summer day. Or as good as any day could be that year. I had dropped my almost 6-year-old daughter Jennifer off at day camp. I was planning a birthday party for her in three days. We would have a pool party and invite…

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Mother’s Day…A Time to Bear Witness

May 7, 2016Community

You know the look….the look that moms of disabled kids exchange when they walk past each other. The look that says, “I understand you.“ A close friend and single mother once said to me how important it was to have someone bear witness to her daily life caring for her…

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You Don’t Know Bo?

May 6, 2016Community, Fundraising

In August of 2014, at the age of two, our son Bo was diagnosed with MECP2 Duplication Syndrome. Our devastation was something I do not ever want to experience again. Our outlook quickly improved, however, when an internet search led us to The 401 Project and the RSRT MECP2 Duplication…

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Modern Family

April 5, 2016Fundraising, Community

Our local coffee shop owner My first-grade teacher Rachel’s high school French teacher Our neighbor Eleanor’s teachers and therapists Friends from high school, college, and past jobs Aunts, uncles, and cousins My car mechanic Ten other families in our area that are affected by Rett Syndrome. Is this an episode…

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Educating the FDA on Breathing Problems

March 31, 2016Community, Research

Breathing issues can be a very debilitating problem for individuals with Rett Syndrome. Interestingly, mice models of Rett also exhibit breathing issues very similar to affected people. The fact that breathing can be objectively measured in both people and mice is an advantage. However, the variations in hyperventilation and breath…

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YouTube Donation Cards: Every Bit Counts

March 25, 2016Community, Fundraising

I’m AJ Tesler and my daughter, Magnolia, has Rett Syndrome. Before I had ever even heard about Rett, I was a producer for a number of different YouTube networks and have created hundreds of videos for YouTube creators, networks and now for my daughter. I continue to work with YouTube…

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March 22, 2016Community

Over the last few years RSRT has heard from a number of parents who reported their child with Rett had an “awakening,” or significant improvement in their Rett symptoms after receiving either sedation for a procedure or other medications.  These “awakenings” lasted a few days to a week and have…

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8th Grader Inspires with Rett Fundraising

March 10, 2016Community, Fundraising

Hi, my name is Ashley Giannetti and I am in eighth grade at Convent of the Sacred Heart Greenwich, CT. This year in our theology classes we were given a project where we had to choose an important topic to us and make a difference in the world. When I…

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Notes from a Doting Aunt

March 3, 2016Community

Jason was the first-born child of my sister Marsha, and his daughter—Zoe Isabelle Rothschild—was the first-born child of that generation, so I was predisposed to fall a little bit in love with Zoe from the get-go. Riding up the elevator of the hospital to visit my niece, Rachel, the day…

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A Word From Randy

March 1, 2016Community

Today is my first day at RSRT, and to say that I am excited would be an understatement. I have been following the Rett field for over a decade and to now have the opportunity to dedicate myself completely to this effort is something I’m really looking forward to.  With…

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Rett Hand Splints: What’s the Verdict?

February 25, 2016Community

Many of our children use hand splints to reduce stereotypies, promote proper wrist and finger positioning, encourage hand use, allow for feeding, reduce anxiety and more. As parents and caregivers, we are all searching for the perfect hand splint. We’d love to hear (and see) what works for your child….

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KCC2 and Rett: The Import/Export Business

January 26, 2016Community, Research

The recent paper published by scientists at Penn State in collaboration with labs from the UC San Diego and the Salk Institute implicating a potentially new therapeutic direction for the treatment of Rett Syndrome has generated quite a buzz among families. It’s a potentially exciting discovery and RSRT is following…

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It’s All About the Sneakers

January 12, 2016Community

Discussions with the pharmaceutical/biotech industry as well as the investor community always begin the same way: How can we accurately test Rett patients to know if a potential medication is working? Are there one or two measures that the Rett clinical community agrees on and that are objective, reproducible and sensitive…

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Support RSRT While You Shop

December 15, 2015Community

There are several ways to support RSRT while you’re doing your holiday shopping. It doesn’t cost you anything extra and is an easy way to give back. The percentage of each purchase that goes to RSRT tends to be quite small (usually .5% to 5%).  So while it’s not a substitute for…

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Ketamine Trial is Recruiting

December 15, 2015Research, Community

Ketamine is a drug that is often given to children for sedation or anesthesia. Experiments in animal models of Rett Syndrome suggest that low (sub-anesthetic) doses of ketamine may improve symptoms of Rett Syndrome, but whether it works in children remains unknown. Case Western Reserve University School of Medicine and…

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RSRT is Giving Away a Tobii C12!

December 4, 2015Community

We are thrilled that a refurbished Tobii c12 with CEye has been donated to RSRT. More and more girls and women with Rett and their families are using eye tracking technology like a Tobii to communicate. We wish we could give one to every family, but we just have one….

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Seven Years and Counting

September 25, 2015Community

Today is the seven-year anniversary of the launch of RSRT. In the midst of crazy schedules and workloads, anniversaries offer an opportunity for a few quiet moments of reflection on both achievements and challenges ahead. For me the last 7 years, while demanding, have been the most rewarding of my…

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Rett and Pharma… What’s the Attraction?

September 1, 2015Community

I often come across statements to this effect, “The pharmaceutical industry is not interested in pursuing drug development for Rett Syndrome because the disorder is rare and companies won’t make any money.” And yet, I am fielding emails, calls and in-person meetings with industry executives almost on a daily basis….

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Gut Microbiomes & Rett: What’s the Connection?

June 26, 2015Community, In The News

People suffering from neurological disorders often have gastrointestinal issues. Rett Syndrome is no exception.  Our kids are often tortured by constipation, reflux, gas pains and more.  It should come as no surprise that the brain and the gut are connected, after all, the gut is lined with over 100 million…

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Gene Therapy Consortium Meeting – A Parent’s Perspective

June 25, 2015Community

Dear Friends, I had a remarkable experience recently at an all-day meeting in Boston with Monica and the scientists of RSRT’s Gene Therapy Consortium that I wanted to share. The Consortium is a collaboration of four labs that are developing a way to use gene therapy to treat or maybe…

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Monica Coenraads Awarded Honorary Doctoral Degree – UMass Medical School

June 1, 2015Community

We’re delighted to share this monumental honor with the Rett community. Our very own Monica Coenraads was awarded an honorary doctoral degree from UMass Medical School at their 2015 commencement ceremonies. It goes without saying that Monica’s knowledge, passion and courage provide not only the backbone but the spirit of…

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We Need 9 More!

January 30, 2015Community, Fundraising

Guest Blogger Beth Jones, whose daughter Jocelyn has Rett Syndrome, urges more families to take action   Yesterday, we sat in 5 hours of traffic taking Jocelyn to Los Angeles for her orthopedic appointment. Her scoliosis is turning her into a question mark, her back brace is so uncomfortably tight…

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Lessons from the Ice Bucket Challenge

November 14, 2014Community, Fundraising

Dear Friends, I’ve been thinking a lot lately about the phenomenon of the Ice Bucket Challenge that swept the nation this past summer. This was a major coup for research on ALS, also known as Lou Gehrig’s disease. By most accounts it resulted in more than $100 million going to…

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A Promise

October 10, 2014Community, Research

Chelsea is 18 years old today. It’s a milestone birthday that parents of special needs children face with mixed emotions. My heart is full with love and pride for the beautiful, emotive, tender yet determined young woman that Chelsea has become. But today I am also mourning. Mourning for a…

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Rett Syndrome: Why Girls?

August 12, 2014Community, Research

Anyone who knows anything about Rett Syndrome knows that the disorder is primarily seen in girls. The disorder is caused by disruption of the MECP2 gene located on the X chromosome. Girls have two X chromosomes one with the disrupted gene and one with the healthy gene. Having some healthy…

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It’s Up To Us

June 18, 2014Community, Fundraising

Dear Friends, A year ago today I started as program director for RSRT.  I thought I would share a few reflections about the people I’ve met and what I’ve experienced and learned over that time. Before starting at RSRT I had met two girls with Rett Syndrome—my own daughter and…

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Diagnosis: Rett Syndrome

March 5, 2014Community, Research

If you’ve ever wondered why a Rett diagnosis is based on clinical features and not a positive MECP2 test or if you have a child with a Rett diagnosis but no MECP2 mutation or the other way around then this is a video for you. What exactly does atypical Rett…

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Fragile X News

June 12, 2013Community, In The News

News from the Fragile X community highlights the challenges of clinical trials. Below is an article from the New York Times written by Andrew Pollack.                 Holly Usrey-Roos will never forget when her son, Parker, then 10, accidentally broke a drinking glass and…

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May 24, 2013Community

Someone once told me that hope is what distinguishes humans from every other species; our ability to look to a potential future rather than live solely in the here and now. This is, of course, wildly inaccurate; I am not a biologist or anthropologist (or any other ‘ist’ for that…

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VIDEOS: “Curing Rett Syndrome – How Do We Get There?”

May 17, 2013Community, Research

On April 23rd in New York City RSRT presented an event entitled “Curing Rett Syndrome – How Do We Get There?” The event was videotaped and is now available on RSRT’s YouTube channel.   Curing Rett Syndrome – How Do We Get There? Monica Coenraads Executive Director of RSRT Monica…

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Innovation Meets Experience

October 26, 2012Community, Research

In January of this year a gentleman who has a granddaughter with Rett Syndrome introduced me to his neighbor, David Scheer, a 31-year veteran of the life sciences industry. I was eager to meet David, whose entrepreneurial focus lies at the intersection of finance and science. Our planned hour of…

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Prof. Adrian Bird Gives Speech at London Event

February 17, 2012Community, Fundraising

Professor Adrian Bird needs no introduction to anyone who follows Rett Syndrome research. His list of accomplishments includes discovering the MeCP2 protein, developing multiple animal models for the disease and authoring the seminal 2007 Science paper which introduced the startling concept that Rett Syndrome and other MECP2-related disorders are curable….

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What Success Looks Like

February 1, 2012Community, In The News

Doris Tulcin – A Mother’s Love Raises the Bar For All Non-Profits Half a century ago, a mother whose baby daughter was diagnosed with a life-threatening genetic disorder decided to fight it. Doris Tulcin is that mother, and Cystic Fibrosis is the disease against which she went to war. First…

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Curing Rett Syndrome: How do we get there? PART II

May 26, 2010Community, Research

On April 18, 2010 the Rett Syndrome Center at The Children’s Hospital at Montefiore in the Bronx hosted their third Parent Gathering. I presented the second part in a series explaining RSRT’s research strategies and the very interesting scientific tools and discoveries on which they are based. I want to…

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Curing Rett Syndrome: How Do We Get There?

July 27, 2009Community, Research

On June 28, 2009 the Rett Syndrome Center at The Children’s Hospital at Montefiore in the Bronx hosted a Parent Gathering. The Director of the Center, Dr. Aleksandra Djukic, warmly welcomed the audience and introduced the first of what will be quarterly Gatherings. Dr. Djukic introduced R.E.T.T. (Rethink Education, Therapy…

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