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My name is Ned Cancelmo. Our extended family of 28 has been at
risk for HD since our Grandmother was diagnosed and died in 1961.
Nanny had four sons, two of whom (including my dad), suffered
and died from Huntington’s. In our immediate family of six, my
youngest brother has been diagnosed and lives in a care facility in
Massachusetts. His 12-year-old daughter has been diagnosed with
Juvenile HD and is showing visible signs of the disease. My other
siblings are all at-risk. In my uncle’s family of six children, three have
In 2005 my wife, Mary Claire and I were strongly convinced that I had
Huntington’s and went to be tested for the gene. We fully expected a
positive result, and had been praying for a long time for the graces we
would need to deal with the news and the reality it brought with it.
On the day we went to get the results, Mary Claire was poignantly
reminded of the Old Testament story of Abraham. Remember
when God asked Abraham to sacrifice his beloved only son, Isaac
on the mountain? And Abraham had the faith to believe and obey
whatever was the will of God, so he took Isaac up to the mountaintop
and was just about to sacrifice him, when an angel stayed his hand.
Similarly, we went to Newark, fully accepting this cross to bear and
believing that God would make something good of it, when at the
very last minute (in the conference room at the hospital) an angel (Dr.
McCormack) stayed the blow by telling me I had tested negative. I
still get overwhelmed with emotion even as I type this 7 years later.
You can imagine what the phone calls to our children were like!! Our
son, Peter couldn’t wait to tell his fiance Cesilia that they could have
babies, with no moral issues or dilemmas to face. Our daughter, Amy
started sobbing and we weren’t sure if she would ever stop.
Both our kids actually thought they had HD themselves, constantly
imagining every misstep to be symptomatic.
So… I know you share our joy and thank you for that. I have sold
my business and retired to enjoy our “new” life. We were given a
great gift and one of my goals now is to be more helpful to, and more
knowledgeable for HD patients and their families.
I have joined the Board of New Jersey Chapter of HDSA, become
an HD advocate on Capitol Hill, and joined both the National
Development Committee for HD and the HD Diplomat Program. The
more I become involved and the more horrific family stories I am told,
the more I am resolved to help the patients and families.
Someday soon , I imagine being able to tell my brothers and sisters,
nieces and nephews, aunts and uncles, cousins and all the families who
are living and dying with this horrible disease, that a cure has been
found, and that angel has stayed the blow for them as well.
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