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Awareness is Not Enough

October 10, 2019Fundraising

I’ll let you in on a secret. I’m not a big fan of Rett awareness month. I think it’s because I’ve never really understood the goal of awareness. Is it to make sure that as many people as possible know what Rett Syndrome is, or is it to raise research…

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If Not Us, Who?

July 20, 2019Fundraising

$26,019,402  That’s the amount that has been raised so far towards our Roadmap to a Cure goal of $33 million. That puts us just shy of 80% to the goal. To say I’m grateful to the 600 plus families who fundraise for RSRT and got us to this point would…

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On the Shoulders of Giants

January 24, 2019Fundraising, Research

2019 started with the exciting announcement that our 2018 research awards totaled $10 million! We take our hats off to the hundreds of Rett families who put their urgency and passion to work raising funds and to our colleague, Tim Freeman, who leads this impressive effort. Although we personally are…

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Three Stars and
Prouder than Ever

January 17, 2019Fundraising, In The News

I’m proud to say that RSRT once again received a three-star rating from Charity Navigator, the organization that assesses the transparency, financial health, and efficiency of non-profits.  The “top” rating is four stars. You might say to me—Tim, are you sure you should be so proud to have three stars…

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Confessions of a Novice Event Planner

October 23, 2018Fundraising, Success Stories

Let me start by disclosing that I am not an event planner nor am I experienced in the world of fundraising or social advocacy. I am a psychologist, an introvert, a dreamer, a neophyte on social media, and most importantly, I am a mom. Before reaching out to RSRT, I…

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Igniting Hope

April 13, 2018Success Stories, Fundraising

The days and months after we received the Rett Syndrome diagnosis for our young daughter, Natalie, were the darkest of our lives. There were times that the grief felt insurmountable, that we’d spend the rest of our lives in this shroud of hopelessness. We kept this mostly to ourselves, save…

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Making It Count

March 12, 2018Fundraising, Research

I’ve blogged about how RSRT solicits and reviews proposals. But what happens once an award is made? For most funding organizations making the award is the last step in the process. The MO (modus operandi) is “congratulations on the award, good luck and send us a report in a year…

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Home Team Advantage

March 9, 2018Community, Fundraising

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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$14,230,348 and 2 cents

December 21, 2017Fundraising

That’s the total that has been contributed so far in donations and pledges towards our three-year goal of $33 million, which is the amount that RSRT needs to carry out its strategic research plan, Roadmap to a Cure. Those funds represent the generosity and compassion of 11,167 individual and family…

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RettGive: Easy, Impactful, Empowering

October 23, 2017Fundraising

I’m not the most tech-savvy person. My wife makes fun of me for fumbling with the TV remote, and my RSRT colleagues have probably good-naturedly rolled their eyes once or twice at my tech-related questions. So when we developed RSRT’s crowdfunding platform, RettGive, I was a little nervous about how…

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How Rett Changed a Granddad

October 4, 2017Community, Fundraising

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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Marlowe’s Web

September 7, 2017Success Stories, Fundraising

We all have those moments when Rett seems to take over our girls completely. It gets intense and scary. That moment when you aren’t sure if you want to scream out in rage or sit in the corner and ball your eyes out. It was at that moment where our…

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The Rollercoaster of Rett

August 31, 2017Success Stories, Fundraising

Being a special needs parent is a rollercoaster filled with highs and lows, love and heartbreak, blessings beyond measure and so much more. You find yourself flooded with emotions you never knew you would have, such as jealousy of other parents, panic of not researching enough for your child and…

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2016: A Year in Review

July 19, 2017Community, Fundraising

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, 2017Community, Fundraising

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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Small Town, Big Heart

January 4, 2017Success Stories, Community, Fundraising

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 Phone Call

December 13, 2016Success Stories, Fundraising

Our precious daughter, Zoey, was diagnosed with Rett Syndrome on May 13, 2016 at 21 months of age. Although we knew something had to be causing all of her delays and slow progress, we were absolutely devastated by the news that it was something as debilitating as Rett. At our…

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RettGive Spotlight: A Father’s Day & Birthday

November 27, 2016Success Stories, Fundraising

Ever since our daughter Ema was diagnosed, we always wanted to do our part to raise funds for the Rett Syndrome Research Trust, with the ultimate goal of helping to find a cure for Ema and the hundreds of thousands of girls like her. We’ve always had great admiration and…

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Event Spotlight: Happy Hour to Help End Rett

October 28, 2016Success Stories, Fundraising

I met Shawn and Kristen Connor and their beautiful daughter, Brynn, over three years ago. Brynn had recently been diagnosed with Rett, so it was a difficult time for them. I know firsthand the shock and fear that come with a diagnosis, and I saw the devastation in their eyes….

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Rett Give: Are You In?

July 27, 2016Community, Fundraising

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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You Don’t Know Bo?

May 6, 2016Fundraising, Community

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, 2016Community, Fundraising

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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YouTube Donation Cards: Every Bit Counts

March 25, 2016Fundraising, Community

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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8th Grader Inspires with Rett Fundraising

March 10, 2016Fundraising, Community

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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Dear Rett: Be Afraid – Be Very Afraid

January 13, 2016Fundraising

Dear Friends, Back in November I posted about how we were on pace to set a new record by breaking the $6 million mark in fundraising by the end of the year. I am thrilled, elated, excited, grateful (no word quite does it justice) to report that total contributions to…

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Breaking a $6 Million Fundraising Record this Year!

November 25, 2015Fundraising, Success Stories

Dear Friends, I don’t want to count our chickens before they’re hatched, but we’re on pace to break a fundraising record this year at RSRT. There is much to do and it’s going to take more people than ever contributing as we get near the end of the year, but we…

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Chicago Hope

June 3, 2015Fundraising, Success Stories

Dear Friends, I am sitting in a plane on the tarmac at Chicago O’Hare, returning home from an amazing event that was spearheaded by a Rett family.  The captain just announced that we are last in line for takeoff—could be an hour wait.  Bummer!  It’s a beautiful Friday afternoon and…

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California Family Sets Record for Online Giving Campaign for RSRT

February 17, 2015Fundraising, Success Stories

Brenna and Mike Johnson of Tustin CA were devastated when their daughter Gisele was diagnosed with Rett last fall. But the Johnsons quickly got to work to make a difference to the research that they know will change Gisele’s life.  In early December they started an online campaign for RSRT…

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We Need 9 More!

January 30, 2015Fundraising, Community

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, 2014Fundraising, Community

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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It’s Up To Us

June 18, 2014Fundraising, Community

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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Prof. Adrian Bird Gives Speech at London Event

February 17, 2012Fundraising, Community

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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