An open letter to Mark Zuckerberg and the Chan Zuckerberg Initiative

Dear Mark and Priscilla,

It feels odd to be writing to you in this way.  Then again, I can’t imagine a better forum to connect with you then the one you dreamed up in your room when you were in college.

First and foremost, warmest congratulations on the birth of your daughter, Maxima. I know very well the tremendous love and joy that comes with a newborn daughter.

I can only imagine the number of letters you have received from worthy causes since the announcement of the Chan Zuckerberg Initiative.  I hope, through the power of the internet and the social network you created, this message reaches you in time.

I have a daughter – Magnolia, age 5 – and I’ve been advocating on her behalf for a cause that aligns very closely with two of your stated goals.  You see, my daughter suffers from a severe neurological disorder called Rett Syndrome.  It is not hereditary.  It can happen to anyone and it impacts 350,000 girls and women and their families worldwide, dramatically.  My daughter cannot speak.  She cannot use her hands effectively.  She has difficulties walking and breathing.  That said, she is considered mild on the spectrum of Rett Syndrome sufferers because she can still eat, she does not have heart deficiencies, she has not yet experienced debilitating seizures, and she is not in a wheelchair.  She requires 24 hours a day maximum assistance in everything she does, but she is mild on the spectrum of Rett Syndrome.  Think about that.

When you announced the Chan Zuckerberg Initiative two of your stated goals were to cure disease and enable personalized learning.

Rett Syndrome has become popular in the genetic research community as its cause is known, specific and symptoms have been proven in animal models to be completely reversible.  That’s another thing to think about – Completely Reversible.  If you can help us, you can fix 350,000 women around the world and their families.

Rett Syndrome is pacing to be the first curable brain disorder.  In a recent issue of Psychology Today, they confirmed as much: https://www.psychologytoday.com/blog/hormones-and-the-brain/201603/curable-brain-disorder

The Rett Syndrome Research Trust (RSRT) is an organization dedicated to funding groundbreaking research to eradicate this debilitating neurological disease.

Here are five reasons why the Chan Zuckerberg Initiative may find RSRT a relevant cause to support:

  1. Rett Syndrome has been proven in the lab to be a reversible condition. This is unique among neurological disorders as is the level of collaboration among leading scientists.
  1. Research on Rett Syndrome is a gateway to understanding and potentially curing other neurological disorders such as Alzheimer’s, Schizophrenia, and Bipolar Disorder.
  1. Rett Syndrome is severe. It causes extreme physical suffering. Imagine the symptoms of Cerebral Palsy, Parkinson’s and Epilepsy … all in one little girl.
  1. Girls and women with Rett have the requisite number of brain cells. Until recently, it has been challenging to measure cognitive levels, but the advent of eye gaze technology has allowed girls with Rett to excel academically.  Cognitively they are in tact.  With your help, we can unlock their potential. 
  1.  After breast cancer, no other women’s disease affects more people. About 350,000 globally, present in 1 of 10,000 births.

The words you wrote in your beautiful letter to Maxima – The only way that we reach our full human potential is if we’re able to unlock the gifts of every person around the world – resonated deeply with us. We often say that girls and women with Rett are locked in bodies that don’t work.

We hope you will consider learning more about Rett Syndrome.  I’ll be happy to introduce you to Maggie or the Rett community.  I think if you were willing to meet some of the girls suffering from Rett Syndrome, you would realize how dramatic an impact it is on their lives and how dramatic a change you could have on their futures.   The Chan Zuckberberg Initiative can make a tremendous impact on our mission to make Rett history.

I wonder if when you were dreaming of Facebook, you knew how much it would change the world, how we interact, how we share, how we communicate.  I wonder that because when I dreamed of having a daughter, I had no idea how she might change the world.   But now I know.  I know she will be a part of the eradication of Rett Syndrome.  I hope you will be too.

Thank you for your time.

Sincerely,

AJ Tesler

dad to Magnolia

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