Just Sayin’: Angleman syndrome hits home for Long Island family
Angelman syndrome hits home for us
Our grandson, Mason, was diagnosed with Angelman syndrome in January 2017, when he was 11 months old. While dealing with the emotional toll of getting that diagnosis last year, our family then found out that his birthday, Feb. 15, is coincidentally International Angelman Day.
As Mason turns 2, we are raising awareness about Angelman syndrome. It’s a rare neurogenetic disorder that results in developmental delays, lack of speech, seizures and balance disorders. The simplest of things can be a challenge for Mason, but he has more perseverance than anyone we’ve met.
He’s unable to do many things a typical 2-year-old can do, such as sit on his own, crawl, walk, speak or feed himself. Yet, he is super happy, loves to laugh and works hard. He gets 12 therapy sessions a week!
His doctors weren’t familiar at first with the syndrome, and we’ve had to learn about dealing with Medicaid. However, there is a lot of hope, thanks to outstanding research and development being done toward a cure. Several clinics have opened, such as the one Mason attends in Boston, and several organizations have educated us and other Angelman families.
Thomas and Lynn Mastrocola, Dix Hills
Limit corporate political spending once again
We have just passed the eighth anniversary of the U.S. Supreme Court’s Citizens United decision, which loosened rules that limited corporate contributions to candidates for election.
This decision precipitated the development of super PACs — also called independent expenditure-only committees. They’re allowed to engage in unlimited political spending. Unlike traditional PACs, they can raise funds from individuals, corporations, unions and other groups without any limit on donation size. Super PACs have been supported by the very wealthy and mega-corporations, entities that have poured money into elections countrywide. I believe this overwhelms the voting by ordinary American citizens. Money is power, and these groups have demonstrated how democracy can be totally overridden with money to take over the government.
I’m a member of Move to Amend, a national movement committed to overturning Citizens United. We haven’t forgotten or given up. We’re growing stronger. Joined by other advocacy organizations like Public Citizen and Common Cause, and supported by sponsors in Congress, the We The People Amendment, proclaiming that “Money is not speech, and corporations are not people,” is on its way.
We will overturn Citizens United and bring back regulation. We will persevere, and support will grow.
Rita Edwards, South Setauket