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Written by Stacie M. Waldman

Published: 14 September 2015

Created: 14 September 2015

Last Updated: 14 September 2015

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Sending a child to kindergarten marks a momentous occasion for all parents. For most, it includes picking out the perfect outfit for the first day of school and making sure a favorite lunch or snack is packed. For the Hahn Family of Quaker Ridge, and specifically for 5-year-old Addie Hahn, it's different. Even in 95-degree weather, Addie has to wear long sleeves, pants, a hat, and thick layers of sunscreen. That's because Addie has Juvenile Dermatomyositis, or JDM. She also has Celiac disease which means she is on a strict gluten-free diet.

Juvenile Myositis, which includes JDM and Juvenile Polymyositis, is a group of rare and life-threatening autoimmune diseases in which the body's immune system attacks its own cells and tissues. Weak muscles and skin rashes are the primary symptoms of JM, and the body becomes easily fatigued. Every day activities like standing up, walking up stairs, or opening a door become Herculean efforts for many kids and they are hypersensitive to the sun. Many children with JM get mouth sores and are at risk for calcinosis or build-up of sheets or lumps of calcium under the skin- it can be very painful. The muscles of the digestive tract, heart, and lungs can also be affected. There is no cure for JM, only treatments that come with severe side effects themselves but also the hope (not the promise) that the disease will be treated aggressively and early enough that a child will go into remission.

Nikki and Drew Hahn and their four children are long-time residents of the Quaker Ridge section of Scarsdale. They love being a part of the Scarsdale community. Drew is the Vice President of the Volunteer Ambulance Corps and a small business owner. Nikki just completed her term as president of the Junior League of Central Westchester. She is the PTA President-Elect and has served as both Girl Scout leader and class parent.

I had a chance to talk with Nikki to learn more about the disease that Addie and the rest of her family have been forced to confront:

It sounds like diagnosis of JM can be challenging. Tell me about Addie's diagnosis.

JM is very rare. Between two to four kids per million are diagnosed with it in the U.S. each year. It's considered an orphan disease. Addie was first diagnosed with Celiac disease last July and went on a strict gluten-free diet. She didn't get better. She actually declined rapidly. Within weeks she started falling while she was simply walking. She had no stamina. She couldn't climb stairs. I was carrying her everywhere and I used a stroller a lot. She had a hard time eating because her mouth was full of sores. She was classified as "failure to thrive" at four-and-a-half. It was devastating. The lowest point was when she couldn't get out of her bedroom in the morning because turning the handle was too difficult for her due to her muscle weakness. She developed a rash everywhere. It was symmetrical and only on her joints. We had been hiking in Michigan so I took her to a clinic and it was treated as an allergy. Back in Scarsdale I took her to a dermatologist. The dermatologist biopsied her hand and two weeks later, actually when we were on our way to a rheumatologist at Columbia in the city because Addie was just fading away, I received the definitive diagnosis. During those weeks, I literally thought Addie was dying and technically she was. She was curled up in a fetal position instead of acting like a normal, happy child.

Sadly, there is no cure for JM, but thankfully there is treatment. What is Addie's treatment like?

If kids are treated early and aggressively, within four months of the onset of symptoms, they have a greater chance of going into remission within two years. However, they still always have to avoid the sun completely. Scientists believe that in addition to a child's genetic make up (including a parental history of auto-immune diseases), exposure to the sun and/or a virus can trigger JM. I clearly remember the day before Addie's rash appeared and we were in a place that was highly exposed to the sun.

Addie was immediately placed on a huge dose of steroids. She became enormous. People looked at me. I actually heard one person say, "Look at that really fat kid." We have a good friend here in Scarsdale who didn't recognize Addie a week after she started steroids. We've been able to taper the drug so she looks like herself again, but the drugs used to treat JM have serious side effects. Addie walked with a limp for a long time. She was big and puffy and we had to buy all new clothes. Her bones are affected. She had eight cavities and this is a kid who brushes her teeth and flosses always. Her eyes are monitored because the steroids can cause glaucoma. Once a week Addie gets a chemotherapy injection of Methotrexate that we administer at home. Unfortunately it can cause hair loss and it has for Addie. Once a month she goes to the hospital for an all-day infusion of IVIG- an immunoglobulin treatment. She gets a really bad headache from this and it takes her a few days to get back to feeling like herself.

How is living with JM affecting Addie and your whole family?

It affects all of us but Addie is really the one directly dealing with it. This is a lifelong disease- she'll always have it. Because of the intolerance to the sun, Addie can never go to sleep away camp. There are so many things she can't do like a normal kid. It was so hot at the Quaker Ridge open house last night and Addie had to wear a hat, long pants, long sleeves, and caked-on sunscreen. She must have been so hot and she never complains! As a family we usually have to avoid outdoor activities. My other kids worry about Addie a lot, especially my fourth grader. She asks things like, 'what happens if the treatment doesn't work?' She fears what could happen. My oldest daughter came home with a drawing in her notebook last year with the caption 'cure JM' and Addie's name underneath it with a heart which means she has gone to the curejm.org website. Penny Randall from the JCC has been an unbelievable resource for me helping me with how to talk to my kids about this as well as Addie's teachers. She always said to be upfront and honest but just to give them the information they need. The CureJM.org website says a lot more than I thought they need to know. It's all accurate- kids die from JM- but it might be more than they need to know at this time.

Addie has asked why her siblings don't have to go to the hospital for infusions. On infusion days, well, those are the longest days ever. We get to the hospital at 7:45 in the morning and then they take vial after vial of blood. Then she is hooked up to machines until 6:00 PM. The infusion center is actually an old closet that they converted into an infusion room. It's so sad to see your kid having to do that. I know it's saving her life but it's so, so depressing.

How has Addie's diagnosis affected your outlook on life?

I don't sweat the small stuff as much and I've realized the things that are really important in life. I'm less type A! I'm also less judgmental; I like to think I'm nicer. You just never know what other people are dealing with. It makes me think of when Addie was on high-dose steroids- when she had a puffy face and looked obese, even had a hard time walking. I'm sure people were so quick to judge.

We've also been so lucky to have Addie's rheumatologist at Columbia, Dr. Eichenfield. He has saved her life, I really believe that. He's such a good person, a really smart diagnostician, and he is so thoughtful with how he approaches each case.

You and Drew have given so much to the Scarsdale community over the years. How can people help Addie and the Hahn family as well as other kids who have had their lives changed forever by this disease?

People can donate money through the CureJM Foundation. CureJM funds research seeking to find a cure for JM. On Saturday, September 19th we are hosting a fundraiser along with another mom from New Rochelle who has a 17-year-old son named Russel with JM. It's at the Coliseum in White Plains and will be a fun, meaningful night for all. Tickets can be purchased at: www.biddingforgood.com/curejm.

If you'd like to donate a service or item for our silent auction, we would be forever grateful. All the money raised at the event will go toward funding research to helping kids like Addie and Russel. We are also raffling off a 2-year lease for a Mercedes sedan and tickets can be bought through the www.biddingforgood.com/curejm site as well. Email nhahn@newsroomsolutions.com for more information on in-kind donations or questions about the event.

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Written by Joanne Wallenstein

Published: 21 September 2015

Created: 21 September 2015

Last Updated: 21 September 2015

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Michelle Lichtenberg has been named Chair of the 2016 Scarsdale Bowl Committee. The appointment was announced by Evelyn Stock, President of the Scarsdale Foundation. As Bowl Committee Chair, Lichtenberg will head the Scarsdale Bowl nominating committee and the community celebration dinner to be held on Wednesday evening, April 13, 2016, at The Fountainhead in New Rochelle. The Scarsdale Bowl is awarded annually each spring to a Scarsdale resident in recognition of his or her outstanding voluntary public service to the community. Robert Jeremiah is the Executive Secretary/Treasurer of the Scarsdale Bowl Committee.

Ms. Lichtenberg has been active in education and civic causes in Scarsdale for over two decades, most recently as President of the Scarsdale Public Library and has held volunteer leadership positions with the Procedure Committee, League of Women Voters of Scarsdale, Student Education Transfer Program, United Way of Scarsdale/Edgemont, Parent Teacher Council, Task Force on Drugs and Alcohol, School Board Nominating Committee, and SHS PTA. Her professional career includes key marketing positons with the Columbia Business School and Washington Circle Theatre Corp. A native of metro Washington, D.C., Michelle received an MBA from Northeastern University and a BA from Skidmore College. She and her husband Frank Lichtenberg have been Scarsdale residents since 1991. Their sons, Andrew and Alec, grew up in Greenacres and are SHS graduates.

The Scarsdale Bowl is administered by the Scarsdale Foundation which operates as a not-for-profit community foundation to promote the civic welfare. The Foundation provides need-based financial aid to Scarsdale High School graduates who are entering their sophomore, junior and senior years in college and to children attending the Recreation Department summer day camp. It also administers a number of special purpose funds, and makes grants for various community needs which have included the Scarsdale Volunteer Ambulance Corps and the Scarsdale/Edgemont Family Counseling Service.

Additional information about the Scarsdale Foundation and the Scarsdale Bowl can be found at www.scarsdalefoundation.org.

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Written by Ellie Month

Published: 02 September 2015

Created: 02 September 2015

Last Updated: 04 September 2015

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School is officially in session and while some students are excited to see friends, meet teachers, and use all their Staples splurges, for seniors September means it's time to write college applications. Many are dreading an upcoming fall filled with applications, pestering parents, and an increased workload. Faced with making what for many is the biggest decision of their lives, seniors struggle with the idea that where they go to college will define them for the rest of their lives, making the process of applying overwhelming and stressful.

The New York Times opinion columnist Frank Bruni visited Scarsdale this summer to discuss his new book, "Where You Go Is Not Who You'll Be: An Antidote to the College Admissions Mania," in which he argues that the college name on a diploma does not determine student's fate. However, it seems pretty hard for seniors here to believe that. We asked three high school seniors and two Scarsdale parents whether they thought the college students go to will define them, and we got some interesting answers.

Senior 1: (MP)
"I don't want to let the college I go to define me, but it's really hard not to let it with all the stigmas and standards Scarsdale sets for college. My peers like to base their fellow student's success on what college they go to. While it makes sense because students work really hard in high school, there are a lot of exceptional schools that Scarsdale students don't know about so they assume they're not good. This misconception makes students applying to these schools feel uncomfortable from the judgmental undertones. However, everyone is going through the same application process so no one is being singled out and we all somehow bond through our stresses. I really want to make the most of my last year of high school with my peers, and I worry that I'm going to be so busy and overwhelmed with college stuff that I might miss out on the fun. However, I'm going to do my best and I'm hoping for a great year and an even greater second semester!"

Senior 2: (SF)
"I'm not worried for college applications, but I do think the college I will go to will define me. The definition isn't in the school name, it's in the person I'll become through my experiences and the people who will influence me over my four years. I think that college is what you make of it, and it doesn't matter about the name or status of the school. All that matters is that I can find stimulating, inspiring people to help me in my learning process. I also think it's important that I make connections for future opportunities, so I need to make sure I put myself out there and take advantage of what my college has to offer. I have found colleges I would feel comfortable at and would grow at that I don't need to fret about getting into. But Scarsdale's standards for college are crazy high. The average SAT scores for the country are around 500 for each section, and I hear kids at school freaking out about not hitting 730. Because of these standards and how well Scarsdale prepares us, I think we're all going to go to great schools and be successful. I try to remind myself of that and not worry too much about the name of the college I will attend."

Senior 3: (CS)
"I don't think the college I get into will define me, I think the definition comes from the person you are. College is what you make of it and can be good or bad regardless of a school's name. The connections I make in college are important for life, but the specific school I go to won't really give me an advantage; the person I am, and my ambition and goals are what will make the difference. I have goals set for myself and I know I will achieve them regardless of my college's name. If I work with good intentions and have integrity from what I've done in high school, I will know I tried my hardest to get in where I do. Regardless of where I go I'll be able to better myself and the world around me and I just remind myself of that."

Parent 1: (JM)
"I think the definition from college comes in waves. For a senior in high school, college defines kids the most because everyone is constantly talking about it and the students are highly competitive. Peers use colleges to judge one another, but the second they graduate the judgements go away since high school is over. Then, a new chapter starts in college and students are influenced by the culture at their schools. Through the way their peers behave, dress, and the school's atmosphere. Then, once out of college, adult's alma matters are a part of who they are but it's not the only defining factor. By then, students have matured into individuals with their own ideas and personalities."

Parent 2: (GH)
"In the short term the college a student attends does define them, but in the long term it does not. College is a big milestone and is the first time many students are living on their own, so they want to be part of a college family and ideology. However, success is not hinged on the college attended, but rather on how a student behaves and lives. The success is determined through whether or not they are hardworking, passionate, focused and observant. Often the smartest or talented people are not the ones who succeed. Success often comes at random moments and one needs to be ready to act fast. Just being a well rated school won't make up for a person's lack of work ethic and interest. Today's world is so stressed with material success and entitlement that people are just looking for any hook or short cut to give them an advantage over others. So, I think that when a student is in college it is a defining factor, but in the long term all that matters is the type of person they are."

As Frank Bruni explained in his book, the path to college is not an easy one; he argues that the person the student becomes is what matters, rather than the brand value of the institution they attend. Even though we all like to tell ourselves that the experience we have in college will be far more important than the status of the school, it's difficult to ignore the rankings in U.S. News and World Report and select a realistic of schools to target.

On the first day of my senior year, my teachers were already consoling us and assuring us that we would all get into great schools. It was only the first day and the teachers were already anticipating a stress-filled year! Though I squirm when friends or relatives ask me where I plan to apply, I know that everyone who applied last year is now off to college. So come this time next year, I guess I will be on my way too, and, as Mr. Bruni says, I will be successful based on my merits not on a college name or image.

Contributor Ellie Month is a senior at Scarsdale High School who writes for the school newspaper, rides horses and has lived in Scarsdale for her whole life.