For Love of a Flower Girl

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My granddaughter, Lily, was the flower girl in our wedding last month.  She could not carry her basket or grasp the rose petals firmly enough to toss them.  Her parents helped her and her dad tossed the rose petals for her.

Trapped in her body by the cruel genetic mutation called Rett Syndrome, Lily, 3 ½, cannot talk, walk or feed herself.  She can’t control her arms or facial gestures.  But she loves!  She makes us feel loved.

Sometimes other children bring her toys, because her face lights up at the attention.  The children respond and hug her.

Sometimes her mom or dad will say, “Lily, give me a hug.”  She tries.  You can feel her move as she tries.  She nuzzles her head into your neck.  She smiles in a way that makes you happy.  And you hug her back, vowing to do anything in your power to help her grow up in some kind of normal way.

Your own generosity “For Love of Lily” last year at the Pittsburgh Field Club has already gone to fund scientists working on a cure for Lily and 350,000 other afflicted girls.  Clinical trials are set to begin within the year.  If successful, such genetic treatment could mean a one-time cure.

Because of the success of last year’s benefit, Bill and I have planned another one for October, 2019, also at the Field Club.  We will not have one this year.  But we are desperate for a cure.  Lily needs help now.  There is no treatment for Rett Syndrome.  There is only hope for a cure, now, when Lily is young and can most benefit from the genetic breakthroughs exploding across many medical research centers.

The Rett Syndrome Research Trust funding this work is a highly-rated 501(c)(3) charity, in which approximately 94% of all donations go directly to research.

Help us unlock Lily from the prison of her Rett-stricken self.  Maybe then, she will be able to fall in love herself and be a bride.

Ann McKenna Fromm and Bill Payne


*WE, THE NEWLYWEDS, WILL MATCH YOUR DONATION DOLLAR FOR DOLLAR, UP TO $10,000.


To make a donation please click on the right side of this page or send a check to:

Rett Syndrome Research Trust

67 Under Cliff Road

Trumbull, CT 06611

203-445-0041


(If you send a check, please write “Lily Fromm” in the memo line.)



What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (11)

  1. Julia & Larry Ondako 
    2 days ago
    $100
  2. joyce lafray 
    3 days ago
    $50
  3. Barbara Maher 
    6 days ago
    $100
  4. Elaine Dullea 
    1 week ago
    $50
  5. GEORGE SCHREIBEIS 
    1 week ago
    $250
  6. Anonymous  
    4 weeks ago
    $4,875
  7. James Fromm 
    4 weeks ago
    $100
  8. Shirley & Stefan Fromm 
    4 weeks ago
    $250
  9. Allison Fromm 
    4 weeks ago
    $100
  10. Feinstein Doyle Payne & Kravec, LLC 
    4 weeks ago
    $1,000
  11. Martha Beard 
    4 weeks ago
    $300

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