ONE TOUGH MOTHER

THE POWER OF MY VOICE

BY CHRISTINE PIACENTINO

Imagine a doctor telling you that your son would lose the ability to walk by age 12. Lose the ability to breathe on his own by age 15. Pass away due to heart failure at age 20. Horrifying right? That was considered the normal progression of Duchenne Muscular Dystrophy in 1998. Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle loss. It is a multi-systemic condition affecting many parts of the body, which results in the deterioration of the skeletal, heart, and lung muscles. Duchenne was considered the #1 lethal genetic disease of childhood. In 1998 and 1999, I started a letter-writing campaign to my two Senators and my Congressional representative. I received form-letter replies. I didn’t understand how Congress worked. I finally got up the courage to meet with Louise Slaughter in her office in Rochester, NY. At the end of the meeting, Congresswoman Slaughter said: “Present a Legislative Bill to Congress, I will support it and sign on as a co-sponsor.” It took until 2001 to get a Bill written.

In February 2001, PPMD brought the

As a mother, I felt powerless. I felt like my world was spinning out of control. I wondered how I could help my son. I couldn’t just obtain treatment for Duchenne Muscular Dystrophy. No drug companies were investing in treatments for Duchenne. There had to be a way to leverage research occurring in Academic settings to interest the drug development companies to invest in treatments.

I needed to become empowered to help my son. To quote the late Senator Paul Wellstone, who was one of the original Duchenne champions in Washington, DC: “The future will not belong to those who sit on the sidelines. The future will not belong to the cynics. The future belongs to those who believe in the beauty of their dreams.” I wanted to stop my world from spinning. I could not sit on the sidelines. I needed to somehow change the future of Duchenne Muscular Dystrophy, not just for my son but for others. I had to use my voice to affect change; I needed to tell my family’s story. I joined Parent Project Muscular Dystrophy’s (PPMD) fight to end Duchenne. fight to end Duchenne to Capitol Hill. I was ready and willing to join the battle. I traveled to Washington, DC, to attend PPMD’s first annual advocacy conference. There was a Labor-Health and Human Services and Education appropriations subcommittee hearing. As I was sitting in the committee room, the School House Rock “Just A Bill” song ran through my head.

I was witnessing the initial steps in getting a Bill passed. During the appropriations subcommittee hearing, Pat Furlong, the President of Parent Project Muscular Dystrophy, asked Congress to invest 100 million dollars over five years for Duchenne Research. The congressional budget to the National Institutes of Health only covered 1/1000th percent of Duchenne Research. The MD-Care Act was signed into law on December 18, 2001, by President George W. Bush. Then-Congressman and now Senator Roger Wicker (R-MS) and former Congressman Collin Petersen (D-MN) sponsored the legislation. It enjoyed more than 300 co-sponsors. The late Senators Paul Wellstone (D-

MN) and Thad Cochran (R-MS) and Sen. Susan Collins (R-ME) led the Senate version. It was cosponsored by nearly 50 Senators. The law and its successors created and strengthened muscular dystrophy research programs supported by the National Institutes of Health (NIH) and created and refined surveillance run by the Centers for

Disease Control and Prevention (CDC). It also established the MD

Coordinating Committee (MDCC), which is still active in informing muscular dystrophy policy priorities today.

A signature achiev ement of the MD-CARE Act and its four follow-on laws was the establishment of the Wellstone Muscular Dystrophy Cooperative Research Centers. For twenty years, these specialized centers throughout the United States have led the field in research and the training and development of researchers leading the fight to end Duchenne. The studies conducted at these centers have provided 30 potential therapies seen in clinics today and five drug approvals in the United States to date.

“I finally got up the courage to meet with Louise Slaughter in her office in Rochester, NY. At the end of the meeting, Congresswoman Slaughter said: “Present a Legislative Bill to Congress, I will support it and sign on as a co-sponsor.””

Muscular Dystrophy Cooperative Research Centers, the MD-CARE act’s impact on Muscular Dystrophy is over $600M in Federal funding leveraged into research, with $50M+ invested by PPMD into Duchenne Specific research. The average lifespan of a Duchenne patient has increased by ten years; as a direct result of PPMD’s advances in care through the 28 Certified Comprehensive Duchenne Care Clinics throughout the United States. lawmakers at all ends of the political spectrum resolve to work together to benefit communities. Therefore, it is crucial to ensure that the momentum achieved over the last twenty years continues. Some forms of Duchenne have treatments available. Many other mutations remain untreated, highlighting the need for a continued strong focus by Congress, the executive branch, and the community.

Paul Wellstone once said, “Politics is not predictions, and politics is not observations. Politics is what we do; politics is what we create, by what we work for, by what we hope for, and what we dare to imagine.” I hope for and dare to imagine an end to Duchenne. As I have for the past 20 years, I will continue to use my voice to ensure the strong focus needed by Congress advances the MD Care Act’s impact. My participation in advocacy has provided me with the opportunity to create a powerful story of how Duchenne affects my family as well and others.

{ SHIFT+CONTROL{ LADY “O” } } YOU ARE ENOUGH. I AM TIRED OF THIS MARRIAGE

BY NICOLE HEROUX WILLIAMS I PHOTOS BY NSP STUDIO BY OMENESA ORUMA AKOMOLAFE

HOW TO WORK HARDER IN A TIRESOME UNION

If you have ever been married or are still married, what you read here today may resonate with you. Love in marriage is very different from love out of marriage or love in a relationship. When you are married, you both build on the foundation. You build on something concrete with the intention of seeing it through. You are building with love, not with strategy. Strategy in this context would mean “One leg in, one leg out”. Reservations, Fear, Presumptions. This is not when people live together for 20 years without getting legally married and when they are asked why, they tell you, “Marriage ruins things.” The funny thing is most of these people have never been married, so that statement is inconsequential. That’s reservation, and I am forced to question if that’s love or codependency, but that’s a kettle of fish I wish not to open today.

When you get married, there are no intentions to ever leave or reservations while you build. Even if there are reservations, those vows you made keep gearing you towards the middle, the center, to stay aligned on your purpose as a married couple. Now, when you have built so hard and so long like that, it only makes sense to reap a harvest. What if you’ve worked hard on your marriage, and it still doesn’t seem to click? Work harder. Of course there are a few exceptions to this, and I’ll mention them in this article, but I still retain my stance, work harder!!!

I wrote this article from a place of experience. After 10 years of marriage and 12 years of friendship, I have gotten extremely fed up and angry at my marriage that I’ve always asked God to forgive me for getting married. I have uttered statements of regret and deep remorse for marrying my husband. I have cried buckets for the things he didn’t do right, and the things he

refused to do. I have been bitter at my choice, but there is something about being bitter. It is a blindfold. It hides you from yourself. It hides you from the bitterness you TOO have caused others. I say this to say that I am writing this from a place of humility. So please, spare me.

******WORK HARD******

1. BE STILL: When you get tired of your marriage, the first thing you want to do is to be “Still”. I didn’t say go on a 3-month vacation to think about the marriage. Sometimes long gaps like that could weaken the cord that is already weak, and it will surely break. You want to be careful with that, especially if deep down in your soul, you still love this person, but are repulsed by their behavior. You could open yourself to temptation and get involved with people and practices that would cause you to escape, but not fix. You could also be given WRONG Advice from people who are just as tired as you are. Be careful!

Well, why would you get tired if you love the person? Because you are human. Human beings are a pile of feelings and emotions, and when triggered, we can say and do anything. Most of our feelings can be validated, but a lot of what we feel are reactions and fallacies based on how we interpret the world to be(Which is highly informed by our childhood experiences). Many of them are not real. That’s why I said, “Be Still.” 3 days to one week or even 2 weeks will reduce the tension in your body, heart and mind.

2. BE HONEST: With yourself. You need to ask yourself where YOU have gone wrong in this relationship. Do you interrupt, yell, cuss, black mail, threaten, beat, silent treatment, taunt, jest, ignore, withhold(Money, Sex, Affection)? Is there sarcasm, selfishness, stonewalling, jealousy, porn, drugs, sex addiction, weak communication,