iOS app Android app

Tay Sachs

Friends and Family Make it Happen

Alexis Buryk | Posted 09.06.2016 | Impact
Alexis Buryk

I have people in my life who make it amazing, both family and friends. And there is an African proverb that says, "if you want to go fast, go alone, i...

How Digitizing Family Photos Helped Three Generations of Photographers Preserve a Remarkable Legacy

Jesse Michener | Posted 03.01.2016 | Parents
Jesse Michener

He reaches up and gently pulls a tuft of his hair to show me how easily it falls out. It's grey now, his hair. It wasn't last April, when we met at th...

Planned Parenthood Made Our Family Possible, And We Aren't Even Patients

Matt Uffalussy | Posted 12.03.2016 | Politics
Matt Uffalussy

My wife and I were not patients at Planned Parenthood while we sought to build our family. But it is the kind of services that Planned Parenthood provides -- and legislation that Planned Parenthood helps lobby for  -- that allowed us to have our child safely and healthy.

Late Onset Tay Sachs Clinical Trial

Alexis Buryk | Posted 10.04.2016 | Impact
Alexis Buryk

I'm incredibly impressed with the work being done by the NIH. And also feel I have to do more. I fully intend to contact Genzyme and find out more about the drug. I don't know how proprietary it is or if it is being distributed in any other country. I need to know more to help my children.

The Fight Continues -- We Will Not Give Up!

Alexis Buryk | Posted 05.10.2016 | Impact
Alexis Buryk

The New York Times did a story on Katie and Allie and their disease. Dr Lisa Sanders does a diagnosis column where she gives the symptoms, and asks yo...

February 28, 2015 Is Rare Disease Day

Alexis Buryk | Posted 04.29.2015 | Impact
Alexis Buryk

And how do I know that? My 26-year-old fraternal twin daughters were diagnosed with Late Onset Tay-Sachs this past November.

What Is Late Onset Tay Sachs?

Alexis Buryk | Posted 04.04.2015 | Impact
Alexis Buryk

That's a question I would have asked as recently as early November of this past year. Unfortunately, I am now all too familiar with what it is. I have 26 year old fraternal twin daughters who were just diagnosed with this devastating genetic disorder. My husband and I were unsuspecting carriers of a recessive gene.

Dragon Mothers and Grieving Parents

Judy Bolton-Fasman | Posted 05.27.2013 | Parents
Judy Bolton-Fasman

There is no one fiercer or scarier or more real in this world than a dragon mother. Dragon mothers are mothers who grieve for children who have died or are terminally ill.

Farah L. Miller

Author Of 'Notes from a Dragon Mom' On Her Son Ronan, Her Memoir And Grief | Farah L. Miller | Posted 03.21.2013 | Parents

“He was totally helpless. That makes me want to live a big life because he never got to make any decisions on his own.”

There Is No Illness in This Town

Gina Nahai | Posted 10.28.2012 | Healthy Living
Gina Nahai

That Iranian Jews should have their own "special" diseases is not as strange as it may seem: Ours is the oldest community in the diaspora, offspring of the slaves who, in the sixth century BC, were brought into the Babylonian exile.

In Arizona, You'd Be Pregnant By Now!

Deborah Stambler | Posted 06.13.2012 | Politics
Deborah Stambler

Some who favor this law are claiming that it protects women. I'm not sure how that logic works. It seems to follow the same rule that claims every woman in Arizona who has her period is pregnant.

On Being A Dragon Mom: Coping With A Terminally Ill Child | Posted 12.17.2011 | Parents

My son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him. I want...