To Our Closest IRSF Friends,

As we at IRSF reflect on all of the amazing things that were accomplished this last year by the Foundation and you - our Board members, volunteers and representatives - your name floats to the top as one of the most cherished reasons we always say, “Together we are better”. In our mission to accelerate research while supporting families, we do our very best to protect hard-earned fundraising dollars, keep staff and overhead costs at a minimum, and be precise in our programs and services to make the most impact we can. Your continued volunteerism and commitment extends our reach, strengthens our support net, and creates a bonded, unified Rett syndrome community. This is a priceless gift to give to the thousands who could be left adrift with nowhere to turn, without research hope on the horizon, raising a child misunderstood by many.

Our inspiration comes from our children: their questioning eyes that look right into our souls; those smiling faces that beam with appreciation for the smallest joys we take for granted – a drink when thirsty, a walk when restless, a dance or wiggle when moved by music or a favorite show, the light of success when a new skill is mastered, however awkwardly or inconsistently; their inner strength and tenacity to make it through countless therapy sessions, doctor appointment, and IEP assessments, all of our makings, not theirs! And our inspiration comes from you. You impress us with your ability to balance life demands, work responsibilities, and still find the energy and initiative to support IRSF. Because you raise your hand to be the face and the voice of IRSF, we remain the largest private foundation to accelerate research and support families. People turn to IRSF because they trust we will have the answers. Because of you, more and more people are seeing the true abilities of our girls, and they want to help. We are making a difference!

We invite you to close 2011 with us, reflect on the good we have accomplished together, the magic that was created, and to get inspired for better things to come.

Thanks to you, we did a whole lot in 2011:

• You held 28 fundraisers for IRSF just within October Rett Syndrome Awareness month alone!
• IRSF was able to fund the best 26 grants out of 81 applications received in 2011, investing nearly $2.2 million for basic and translational Research to Reality projects
• Over 50 newly diagnosed families came to IRSF for guidance and support, and many are fast on their way to acceptance, empowerment, and community
• We held the hands of over 20 families as they said goodbye to their Angels on earth, and renewed our promise to make a better tomorrow out of what we learned from their time with us
• Our Regional Reps led the way in social media, creating state specific Facebook pages for quick easy access to each other and information, while holding countless events in their communities
• Special Interest Networks matured and grew, with Grandparents and Educators especially forging new paths
• Governor Proclamations were secured in 30 states naming October as Rett Awareness month
• NIH-funded IRSF-supported Natural History Study entered its sixth year of data collection, an impressive commitment, that continues to reveal important info about RTT and is held up as an example by the NIH of how to understand and approach the study of rare disease
• Rallied supporters to vote online, winning tons of awareness for RTT, a $45,000 Chase Community Giving Grant, thousands of matching funds from Vivint Home Security, and thousands in value of Sears merchandise points for 2011 fundraisers from RMRA
• Boston family conference an unforgettable certain highlight of the year
• Clint Black PSAs reach millions in October and November, with more traction to gain in 2012

Did you know IRSF was contacted by, and helped, families just like you in over 35 countries, in places everywhere including Western Europe, Eastern Europe, Canada, Mexico, South Africa, Argentina, Brazil, China, South Korea, Iceland, Israel, Turkey, Pakistan, India, and the Philippines, just to name a few? Our experiences are universal, and our hearts have the same hopes, no matter the language we speak!

What will we do in 2012?

• IRSF welcomes a new Chief Scientific Officer in January to usher our Translational research agenda to the next level as targeted in IRSF’s 2008 Landscape Research Analysis
• Host the World Rett Syndrome Congress in New Orleans – what an honor and we hope to see you there!
• Find and connect more families. Estimates are there are two (2) families living with Rett syndrome for every one (1) that we know, and with your help, we will find and support them
• Challenge our Professional Advisors to continue to broaden their views about ways to improve the day-to-day lives and health of our children
• Fund-raise, Hope-raise and have some fun while doing it!

So many more achievements were made in homes, schools, offices, clinics, hospitals, and labs around the globe than we can recount here. We just wanted to touch on the ones that stand out as your personal successes. We recognize your work, we know what it took to accomplish this, and we appreciate you!

Happy New Year,
Paige, Jennifer, and Lisa
Your IRSF Family Support Team

IRSF is the world's leading private funder of basic, translational and clinical Rett syndrome research, funding over $24M in high-quality, peer-reviewed research grants and programs to date. Annually, IRSF hosts the world's largest gathering of global Rett researchers and clinicians to establish research direction and priorities while exchanging ideas and the most recent information. IRSF is the most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and emtional family support and stimulating research aimed at accelerating treatments and a cure for Rett syndrome and related disorders.IRSF has earned Charity Navigator's most prestigious 4-star rating. To learn more about IRSF and Rett syndrome, visit www.rettsyndrome.org or call IRSF at 1-800-818-7388 (RETT).