Posted at October 12, 2013 | By: | Categories: Foundation | 31 Comments

Honor Robby Miller with Your Thoughts

Robby MillerThe NFXF Board of Directors accepted the resignation of Robby Miller at its regular board meeting in Detroit on October 12, 2013. Miller will continue to work at the Foundation through December 31, 2013. Have a fond memory or interesting story you would like to share about Robby Miller? Share your comments or thoughts here.


  • I was saddened to hear that you will be leaving us at the end of the year. You have been such a presence for so many years and are truly looked up to by our families. It will be hard to think of fragile x and to know you are not a part of it. You are one of the true pioneers who have helped us navigate this journey, traveling a path that was not steady, to traveling a road that has direction. I want to thank you for your years of service, for your kind words and wisdom, for your ability to see the big picture and making us all a part of it and for making the National Fragile X Foundation the organization it is today. You will be missed greatly.

  • From Uruguay,Thanks for your help!

  • Robby,

    I am so sorry to hear that you are leaving as Director of the National Fragile X Foundation. You have led the organization to prominence nationally and been a devoted champion for those affected by fragile X and their families.

    Gail and Steve Schmidt

  • You will be missed. Our daughter, Amy, commented that at our conferences you suggested to check out the “at a glance page” in the conference notebook! Putting on the conferences is a lot of work and you have provided the doctors and other professionals and families up to date information and a way to network together to share ideas. You are welcome to visit us in Montana and I would love to treat you to a visit to Yellowstone and other awesome places (provided the government shutdown doesn’t continue to close Yellowstone)! Here’s a big hug from all of us. Thank you, thank you, thank you!

  • Goodbye Robbie, We’ll miss you. Thank you for all your help. I wish you the best of luck, in your future endeavors.

  • We are blessed. Your commitment, dedication and faith never went unnoticed. We deeply appreciate all you have provided to all us. Celebrating you! Thank you, Robby!

  • Robby, wishing you only the BEST. Thank you for all that you do and have done. hugs, Sally

  • Along to my connection to families with fragile X was my enjoyment working with Robby. He is an inspring, tireless, creative, open and incredibly supportive leader and never stopped finding new ways to support and encourage collaborations of families and professionals working towards the common goal of improving the lives of individuals affected by fragile X associated disorders. He definately tops the list of “best bosses”. I send all my love and best wishes to him and his family as they move ahead to whatever the next venture is! Liane

  • I am saddened and feel a loss. Robby, you have made a tremendous difference in the lives of the Fragile X Community of families, clinicians and researchers. You have made the world a better place for which I am so thankful! I will miss you, Becky Kronk

  • Hi Robby,
    We are soooooo going to miss you. Thank you so much for all you have done for Fragile X. You have made such a difference in so many lives. We wish only the best for you :)

    Nina & Frank Liberati
    Fragile X Association of Michigan

  • Robby, you are the best thing that ever happened at the National Fragile X Foundation. Your leadership started when it was a small one man office where you did everything from running the conference to picking up the mail. And speaking of picking up the mail, you were always eager to open the mail and eventually banned from mail opening due to you exuberant mail opening style. The Foundation has grown up with you at the helm. And with this you have made a positive impact upon thousands of people – I’d say “this is one very successful human being.” I have an endless amount of positive words for you and will do so to you personally. You were a great person to work for, the best. Before I go, I must say that I always loved “The Miller Burrito” which is an accumulation of a variety of foods into one burrito. This is sort of like Robby Miller, funny, kind, serious, hard working, knowledgeable, friendly, loyal, has a wide range of interests, great written and oral communication skills, great organizational skills, innovative thinker and an ability to keep pace with social, technological and developmental changes.

  • The National Fragile X Foundation without Robbie; sad thought. Robbie you have always been there as the calm voice of reason and a really good listener. Thank you for your leadership and guidance! I know I told you that Kelley wanted your job but not this way…….Good luck to you and thank you!!

  • I remember speaking to you about 10 years ago when my son was diagnosed. You were so positive and supportive that I felt assured that my “new community” would be a lifeline for the rest of my life. Thank you for those encouraging words and advice. God bless.

  • Robby, you really saw an organization grow to a large presence in the Fragile X world. It will be hard to think of the Foundation without you being at the helm. I very much appreciate all the work you put in over the years on the conferences and getting the word out. I also loved how friendly you were – I remember talking to you several times over the years at different events. Best of luck, and thank you!

  • Danielle, Jacques & AJ Andreassi-Lachapelle

    October 23, 2013 at 3:05 PM (Reply)

    Thank you so much for your time, dedication, kindness and compassion that you have offered us individually and to all of our familiess. You will be greatly missed. Affectionately, Jacques, Danielle and AJ Andreassi-Lachapelle

  • While Canada has some wonderful information and websites. You and the resources from the National FX Foundation are wonderful. As a parent two boys with FX I can’t thank you enough for your dedication and commitment to this cause.

  • Wow. Robby, your voice was a beacon of hope and light on the other end of the phone line 14 years ago, the day after we got our first son’s diagnosis. And you’ve been exactly that for so many of our FX families over the many years. You have served our community so wonderfully. I’m saddened by the FX community’s loss and hopeful that the paths you are pursuing bring you great happiness!

  • Robby, I SO enjoyed working with you! Thank you for making our meetings so productive and enjoyable. Best wishes in your new endeavors!


  • Robby, when we first met in 1999 when I was on the Board of Directors, you and I became Co-chairs of the 2000 International Fragile X Conference in Los Angeles and 14 years later, it seems that we are still connected at the hip. I wish you success in whatever direction your future endeavors take you. All the best to you and your family. You will always be a part of the Fragile X Family.

  • Robbie Miller and NFXF go together like milk and chocolate, like basil and tomatoes, like apples and peanut butter. Robbie your kindness, leadership and firm presence will surely be missed. Thank you for all those years of helping the FX community. Know that we are kindly wishing for you, all the best!

  • Dear Robby,
    I remember you answered my first phone call to the NFXF when my family and I were challenged by my son’s behavior as he transitioned from childhood to those teenage years. You spent a long time on the phone with me answering as best you could my questions and offering support in various ways. My son is now 23 and making a successful transition to adulthood. You and the NFXF have been a significant and positive contribution to his life and the well being of my family. We send you good thoughts and best wishes on the next stage of your journey.

  • Robby will be sincerely missed. His presence was a constant thread of support, knowledge and kindness. He was always available for a phone call in his office or a chat during a busy conference – never too busy to give his full attention, a rare and beautiful gift. Wishing him and his family every happiness.

  • María Silvia & all Argentina's Families

    October 24, 2013 at 10:12 AM (Reply)

    Dear Robby,
    We are very sad with this news … We appreciate so much all your work of these years. We will miss you!
    We wish you the best. Good luck and, again, TANK YOU, THANK YOU THANK YOU!!!!

    María Silvia and all families of the Argentine FX Association

  • I remember meeting Robby for the first time at the Indy conference. He made my wife and I feel welcomed and helped so much. Thank you so much for all that you have done for our “Fraggels” and God Bless you

  • When our grandson was diagnosed with Fragile X 10 years ago, my husband called the foundation’ s phone number for support. He was so surprised that Robby Miller himself took the time to talk to him and answer questions. We will never forget how it helped us so much during that difficult and confusing time. Thank you!

  • We will miss you Robby! Truly a leader for us and thank you!
    Alexis in Towson, Maryland

  • Robby–
    It has ben a joy knowing and working with you all these years. You are among the most principled and responsive executives it has ever been my pleasure to meet. When we disagreed I always found merit in your positions, to the point I sometimes changed mine. I count you as a friend, and hope you stay in the same field so that we can meet and work together again. All the best,

    Andy Levitas

  • Robby is a truly inspiring leader. I will always have fond memories of my time working at NFXF, largely in part due to Robby’s tireless dedication and deep connection to the Fragile X community. I can only hope that my future bosses will measure up! Best of luck with everything.

  • Robby. Your dedication to families with fragile X is unsurpassed and you will surely be missed at NFXF.

  • I can only reiterate what many before me have said…. Not too busy to speak with a troubled parent on the phone or at a conference, a strong and dedicated leader, a friendly soul. THANK YOU for your years of dedication, building the NFXF into what it is today. I hope to continue to see you in the future.

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