Saturday, Nov 23rd

morettiakilahScarsdale's Anne Moretti fell in love with lions and Africa when she was in grammar school and saw the movie Born Free. She loved the people, the animals and the beautiful landscape of Africa. Over the years, she "became more interested in the African people, the culture, the politics, the feel of the unspoiled earth and the more relaxed way of life."

She studied African politics at Georgetown, and spent a year in France where she met several medical students from Burundi. She worked with them and constantly discussed politics. She went to Columbia University for my Master's Degree in Economics, hoping to return to Africa (I had spent a summer in southern Africa in 1979). When she didn't get the job at United Nations that she wanted she accepted a job on Wall Street at Irving Trust Company. She needed the money, so she took it. Since she spoke Chinese, she was assigned to cover Asia and her husband to be, Mike Moretti was assigned to cover Africa. Well, since she was interested in Africa, and Mike was too, that all worked out. Mike grew up here in Scarsdale, so they ended up here.

She continued her interest in Eastern Africa over the past 35 years and when her son Luke went to Vanderbilt Anne noticed an article on the University's website about a young Vanderbilt alum named Elizabeth Dearborn-Davis who went to Rwanda and started a college for women.

rwanda1Anne explained, "Ah! I thought, that is what I always wanted to do .... make an impact in an area of Africa which I love and where people are working so hard to make a future for themselves. Elizabeth did that. She is a phenomenon and someone to watch! I am so impressed by her and by the accomplishments of the young women of Akilah a college for woman. Mike and I have been supporters of Akilah (a 501c3 corporation) for the past several years. This year, there is an acute situation due to the political crisis in neighboring Burundi where Akilah's sister campus was forced to close in April due to political unrest and an atmosphere of violence. The girls at that campus ALL want to go to Rwanda to continue their studies. 44 girls have the accreditation needed in Rwanda, and it appears that they are finding host families in Rwanda where they will live. They want to continue their studies at Akilah, in Rwanda, and that requires additional funding."

You can help these girls graduate college so that they can give back to their families and communities they seek to serve. Here's the link to the fundraiser page:

Moretti recently travelled to Rwanda for two purposes: to visit the school and see what she could do to help the Burundian students who have fled to Rwanda, and to see firsthand what is happening to refugees who have been forced out of their homes in Burundi into camps in Rwanda.

Here is an excerpt from her blog about her trip to Mahama, Rwanda where approximately 44,000 Burundi refugees are being housed.

From Anne's Blog:

As I was preparing to leave, I walked into the dusty white UNHCR (United Nations High Commissioner for Refugees) tent to say a quick goodbye to the camp director.

There were several men, all new arrivals to the camp, sitting quietly on a wood bench along the wall, waiting to be processed into the camp. A twenty-something Burundian woman at the end of the bench stood up as she tried to console a tiny baby wrapped around her slim waist in a traditional African scarf.

Through my interpreter, I asked her how she had come to be here at Mahama. rwanda2Speaking softly in Kirundi, she said that when the violence began in April, she was too pregnant to travel. Her baby girl was born in May, via C-section, and the father abandoned them at the hospital.

Though she hadn't healed well from the baby's delivery, and she had barely enough money for the bus to take her and her baby across the border into Rwanda, she left Burundi with just a little reed basket which held a few items for her baby. Once they arrived in Rwanda, she paid one of the local moped drivers to transport her over the winding and rutted, red dirt roads to Mahama.

Standing there with dusty sandals and her naked infant daughter wrapped across her chest, she stared at us with big eyes, wide but expressionless. The baby kept crying. I asked if she were nursing, and she said yes, but it was watery, with no milk. I asked if she had eaten, and she shook her head slowly. No, she said, she hadn't eaten for days.

What was shocking to me was not this young mother's story, but that stories like this are so common among the refugees in this camp. Thousands of the residents in Mahama are unaccompanied minors, with no parents, or are young adults traveling alone.

There are farmers and teachers, college students and toddlers stuck here, waiting for order to return to their country. No one I spoke with seemed to think that would happen anytime soon, and there is no talk of returning home for fear of reprisals. Once a person is registered as a refugee, they are viewed suspiciously by the Burundian police, government, and the Inbonerakure.

As the Syrian refugee crisis has pricked the conscience of Western governments into taking action to help these populations, the crisis of Burundian refugeeism has gone largely unnoticed. It began last April when President Nkurunziza announced his intention to run for a third term as president, despite a constitutional two-term limit.

Since then, there has been a huge surge in violence and killings, and over 200,000 Burundians have fled their country fearing persecution amid the threat of political violence. They travel for days, by bus, on bikes, or on foot to cross the borders, headed for refugee camps in neighboring Rwanda, Tanzania, the DRC, and Kenya.

Political persecution, violence, and an atmosphere of rwanda3intimidation has ebbed and flowed in Burundi over the past six months, but the absence of any independent news media makes it difficult for outsiders to verify daily reports of police torture and interrogation.

The Inbonerakure, a youth militia armed by Burundi's ruling party, routinely threatens people they accuse of opposing President Nkurunziza. Prior to the July elections, the U.N. stated that any elections held in this climate of widespread intimidation would be considered neither free nor fair. Nonetheless, elections were held and were boycotted by the opposition. President Nkurunziza claimed victory and a mandate for staying another five years in office. Police attacks on citizens, clandestine killings, and widespread fear continue unabated.

Burundi's sister country to the north is Rwanda, with whom it shares a Belgian colonial history and the same ethnic populations of Hutu and Tutsi. Rwanda has worked hard in recent years to overcome its dark history of the 1994 genocide. The country has moved noticeably forward, making encouraging strides in its economy, health services, educational system, roads, and infrastructure.

Burundi, on the other hand, has slid farther into economic decline and continues to rank as one of the world's poorest countries.

In escaping their home country, tens of thousands of Burundians have crossed into Rwanda, where they have been welcomed and assisted, whether in the private homes of friends or the growing refugee camps. These camps have been set up quickly to accommodate the exploding numbers seeking refuge.

I recently visited the largest refugee camp, Mahama, located in Rwanda's Kirehe District (near the Tanzanian border). As of September 30, there were approximately 44,000 Burundian refugees at the camp, with 30-100 more arriving every day.

UNHCR runs the Mahama Camp in conjunction with the Rwandan Ministry of Disaster Management and Refugee Affairs (MIDIMAR). Among the NGOs operating at the Camp, the more visible ones include World Food Programme, Save the Children, American Refugee Committee (ARC), UNICEF, PLAN International, UKAid, and World Vision. Coordinating supplies, NGO activities, and handling the daily care of 44,000 refugees is an enormous undertaking, yet Mahama has organized quickly and prioritized the more important aspects of daily life.

The Camp Director, Aristarque Ngoga, is fully committed to improving life for the refugees. Echoing the sentiments of many Rwandans, Mr. Ngoga expressed the gratitude his country feels towards Burundians in remembrance of their humanitarian assistance to them during the 1994 Genocide.

In addition to refugee camps, many thousands of Burundians have been taken in by Rwandans privately, no matter how meager their financial situation.

Given the worsening political climate in Burundi, Mahama officials are actively preparing for even more refugees. More permanent structures are currently being built to transition the thousands now living in tents to a more stable living environment.

Schools have been set up for the children who study in makeshift classrooms in tents. There is a critical lack of school supplies, but the daily teaching of children in both primary and secondary school is one of the highest priorities at Mahama.

Health-wise, the camp population is not experiencing any serious diseases, and there were reportedly some mild cases of diarrhea and conjunctivitis. The camp works hard to educate the refugee population in sanitation standards to thwart more serious diseases like malaria and cholera.

World Vision recently installed a water filtration system with assistance by UNHCR, UK Aid, and a few other organizations. This has provided camp residents with abundant access to clean water, trucked in from the local Akagera River, just down the hill from the camp.

Food consists of dry grains measured out on a large scale and poured into whatever container a refugee brings to collect the food.

There are orderly queues of refugees every day who wait patiently for rations. The monthly rations of rice, dry maize, corn, and beans are given out with cooking oil to last a month. Weighed out on a scale, amounts are multiplied times the number of people in your family unit.

Life is easier for families with multiple members than individuals living solo in the camp because kitchen sets are more available for larger family units and there are more food options available. Also, in Burundian culture, women do the cooking, so men in refugee camps often find themselves facing new challenges if they arrive alone at a camp or if they are not part of a family unit which includes women. They can be more prone to malnourishment since they don't know how to cook the dry foods they receive. Women are generally supportive, but this can be an issue for some refugees.

While I was there, there were long queues of people waiting for a bar of soap. Another line of women were waiting to pick up sanitary napkins. I viewed the facilities where the grains are stored, including beans, rice, maize and corn. Although supplies are kept clean and orderly, and are well-controlled, there is a serious shortage of nearly every resource, from food to clothing to medicine to educational materials.

Burundian refugees are the forgotten refugees. U.N. assistance and NGOs are spread thin. Outside organizations provide extra supplies, but the camp is in desperate need for additional assistance, especially as the crisis in Burundi continues to worsen.

rwanda5Mahama is also a story of children. Nearly half of the refugees are under 18 years old, and thousands of them are unaccompanied minors.

Many have travelled alone or with siblings. They have witnessed things that children should never see. While they run through the Camp with a smile on their face and hope in their heart, they are barely surviving on minimal food, and they going to school in tents hoping for a better tomorrow.

At Save the Children, I watched as three guys assembled a wheelchair in a matter of minutes. Many elderly and disabled people are in need of wheelchairs, and only a small fraction have access to them.

Mahama depends on donations of wheelchairs from various organizations. Alfred Twahhirwa, who heads up Save the Children's activities at Mahama, told me how he handles the ongoing need for children's clothing and medical supplies. They keep lists of the most needy, and whenever they receive donations of clothing and other goods from churches and other organizations, the items are distributed to the residents identified as in most urgent need.

There are many young adults at the camp. Before they fled their country, these young men and women worked as nurses, teachers, farmers, and salespeople. Many were attending college.

They want to return to their home and to their lives, but they cannot. None of the refugees I spoke to would ever consider going back to Burundi now, for safety reasons.

They have nothing to do here, but they're creatively trying to move ahead in their lives. An enterprising group created a club at Mahama to learn English. Packed in a tent, the eager students squeezed together on wooden benches as they shared the excitement of learning English.

Burundi is still a French-speaking country and has become isolated in central east Africa for its lack of English-speaking alliances. Rwanda transitioned five years ago, from French to English, and the benefits of tourism and doing business with its Anglo-speaking East African partners have helped the country immensely.

Among the numerous NGOs operating at Mahama, I noticed no French or Belgian organizations, which is curious given those countries' integral connection with Burundi's past.

The cause of Burundi's refugee crisis is identifiable, and the ensuing human tragedy is escalating, but there is little news coverage of these stoic refugees whose daily lives consist of waiting outside of their country in limbo, in a camp that is more like an open prison where they are free to come and go, but there is nothing outside the camps for them. They cannot go home, and they cannot move ahead with their lives.

concoursviewOn a typical day in Scarsdale, village parking spots are aligned with SUV's and late model foreign cars -- but on Sunday October 4 the Village looked a bit different: A hundred vintage cars were on display at the Scarsdale Concours D'Elegance, a car show and community event for connoisseurs and novices alike. Though Hurricane Joaquin threatened to delay the show, the storm veered right toward the open seas leaving clear skies for visitors to enjoy the display.

concours2The cars and owners hailed primarily from the Tri-State area. Many of the cars in the show would not only attract attention but also wreak havoc on NY's interstates as they were certainly not built for today's roadways.

The Scarsdale Concours has a history of young leadership, as Evan Cygler and Dennis O'Leary founded the show when they were students at Scarsdale High School. Before they even had their driver licenses, Cygler and O'Leary had developed a passion for cars and car shows and took the initiative to find supporters in the village. concoursfoundersBy reaching out to interested members of the community and local government, their idea grew into a popular event that has sustained interest over the twelve years since its establishment. According to O'Leary, what is most unique about this show is its venue. Car shows are traditionally on grass, but Scarsdale's has a prime location in the village, surrounded by local business to maintain a steady flow of guests throughout the afternoon. Cygler and O'Leary have passed the baton to new leaders to organize the event, but return every year to see their legacy in action, with the hopes that the show will continue to get people excited about cars and bring the community together.

This year, Scarsdale High School Senior Ben Hasson begins working on the show eight months before the event. Having participated since he was 13 years old, Hasson reflects, "Being on the board of the Scarsdale Concours has provided me with four years of an excellent learning experience... I have been learning how to communicate with companies and individual adults in a professional manner." He devotes time to attending other car shows to look for owners interested in displaying their "third child" at the Scarsdale concours5show. While the Scarsdale Concours is a family event, it also has a solid reputation as a great car show among collectors. The community vibes and pleasant setting of the event appeals to many owners, while others enjoy competing. Sponsors like Black Rock choose winners to award its prize and professional judges, who evaluate the car's physical appearance and condition and award the Best Muscle Car and the Best Sports Car. Many of the owners return year after year.

Essential in its purpose is the show's commitment to serve local charities. Thanks to passionate and dedicated helpers like Hasson, the show has raised more than $300,000 for local charities over the past twelve years. This year, the money went to Scarsdale and Edgemont Family Counseling Service, Warriors and Family Assistance Fund, and the Scarsdale Foundation.concours8concours4concours1

Contributor Carly Glickenhaus is a Senior at Scarsdale High School. She is the goalkeeper on the Girls' Varsity Soccer team and enjoys writing and photography.

AWARD WINNERS - 12th Annual Scarsdale Concours d'Elegance
Scarsdale, New York - Sunday, October 4th, 2015

BEST IN SHOW: 1958 Jaguar XK 150-S Cabriolet, David Porter

 

BEST ITALIAN CAR: 1953 Alfa Romeo 1900 CS Berlinetta by Pinin Farina, Michael Bruno

 

BEST AMERICAN CAR: 1958 Chevrolet Impala Sport Coupe, Kevin Kingsland

 

BEST GERMAN CAR: 1964 Mercedes-Benz 230 SL, Jerry Robinson

 

BEST ENGLISH CAR: 1960 Aston Martin DB4 by Carrozzeria Touring, Michael Odierna

 

BEST COMPETITION CAR: 1931 MG M "Boattail," Malcolm Pray family

 

BEST MUSCLE CAR: 1969 Ford Shelby GT 500 Sportsroof, Marcel Perlman

 

BEST BRITISH MUSCLE CAR: 1987 Aston Martin V-8 Vantage, Tom Papadopoulos

 

BEST FERRARI: 1968 Ferrari 365 GTC, Bill Woodburn

 

BEST PORSCHES: 1965 356C Coupe, Joseph Catanzaro and 1973 911E, Dwyer Family

 

MOST EXCITING CAR: 1980 Ferrari 512 BB Berlinetta Boxer, John Curreri

 

MOST OUTSTANDING COACHWORK: 1972 BMW 3.0 CS, Gary Studnik

 

FOUNDER'S CHOICE: 1967 Sabra Sport made in Haifa, Israel; Elias Wexler

 

JUDGES' AWARD: 1936 Bentley Derby Drophead Coupe, Michael Fitzsimons

 

CONCOURS BOARD AWARD: 1932 Ford Model 18 V-8 Roadster, Michael DeAngelis

 

BLACKROCK BEST INVESTMENT AWARD: 1961 Chevrolet Corvette 348 with fuel injection, Larry Sachs

 

CHUBB COLLECTOR CAR INSURANCE AWARD: 1948 Pontiac 8 Woody, James Bruno

 

MAROON & WHITE COMMUNITY AWARD: 1968 AMC AMX Fastback, Robert Carlsen

 

PRESERVATION AWARD: 1964 Cadillac Fleetwood Sixty Special with 37,750 original miles, Leif Waller

 

MLicktenbergPhoto3Michelle 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.

NicoleEisenmanArtist Nicole Eisenman has done it again! The 50–year-old painter and sculptor who attended school in Scarsdale has won a MacArthur Genius Award, granting her $625,000 over five years to use as she wishes. Eisenman was one of only 24 people selected to receive the prestigious award that affords the recipients complete freedom to express their creativity during the five-year term. Others on this year's list include Lin-Manuela Miranda who wrote, produced and stars in the Broadway hit "Hamilton, " and Marina Rustow of Princeton University who is mining ancient texts to shed new light on Jewish life in the medieval Middle East.

Eisenman uses her artwork to make statements on contemporary issues such as politics, gender, history, mores, technology, family, wealth and power and "sometimes paints the world the way she wants it to be." In a video on the MacArthur Foundation website, Eisenman explores her sources of inspiration and says she had two great aunts who were painters and that she grew up in a house full of their art. She loves the visceral quality of painting and the connection between her eye, her hand, the paint and the canvas.

According to Eiseman, "The Fellowship gives me an extra boost of confidence to go forth and do what I have been trying to do my whole life."

Eisenman has been receiving accolades for the last several years. In 2012, 45 of her portraits were displayed in the Whitney Biennial, in 2013, she won the Carnegie Prize and in 2014 she had a solo show at the Contemporary Art Museum of St. Louis and also travelled to St. Petersburg Russia where her work was displayed in the Manifesta 10 show.

Eisenman grew up on Brewster Road in Greenacres and is the daughter of former Scarsdale Trustee Kay Eisenman. She attended Scarsdale High School and art classes taught by Joan Busing. Two murals that she painted on the walls of Scarsdale High School remained for 20 years before they were taken down. She graduated from the Rhode Island School of Design in 1987. Asked for a comment on the momentous news, her mother Kay and father Shelly said, "We are humbled by this honor but don't feel we can take too much credit. She has had a very fortunate trajectory with her art and we are always waiting with bated breath for her next step."
BeerGarden

hahn1Sending 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.Hahn2

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.