New Beginnings...

We are finally moving into our new offices!!! Our new address is 2414 Morris Avenue, Suite 110, Union, NJ 07083. The phone numbers will stay the same. We are all so excited. Our offices are modest, but not far from our previous offices, and we can afford them. Our new landlord painted them a soft yellow and they put in green carpeting. It has lots of windows. New Beginnings....

Other News:Unfortunately, Oprah's Angel Network turned us down. Thank you for writing and calling, but they get so many requests they were not able to help us.

We have a big fundraiser planned for June 17th. On Saturday evening, June 17th, CARES Foundation, Inc. will present its event "Celebrating Five Years of Saving Our Babies" at the Maplewood Country Club in Maplewood NJ, just outside New York City. The event will honor former Governor Donald DiFrancesco. The honorary chairs are Former Governor Thomas Kean (head of the 9/11 commission), former Governor Brendan Byrne, Former Governor and current NJ Senate president, Richard Codey, US Senator Frank Lautenberg, and several other state Senators and an Assemblyman.

The evening promises to be an exciting one, featuring casino games, cocktails, buffet dinner and dessert, silent and live auctions and a raffle.

We are pleased to honor Governor DiFrancesco for signing an executive order five years ago that dramatically expanded newborn screening including CAH in New Jersey and saved hundreds of babies from death, severe mental retardation, or devastating disability by being able to detect genetic metabolic and endocrine diseases and administer early intervention. We are forever grateful to the Governor for saving our children and giving them a healthy start at life.

We need help from you. If you can help us in obtaining silent and live auction items, sponsors for the event and if you live nearby and come, please let us know.

We need to raise funds to help us defray the costs of rebuilding and to provide funds for our research grants. In June, we are obligated to provide $70,000 to the NIH to support the CAH clinical trials.

I know many of you have benefited from the clinical trial at the NIH. We need to continue our grant to NIH, and need this event to be successful in order to fund it.

We are also planning a fundraiser in CO, just outside Denver for July 22nd. We will need some help for this event as well.Again, let me know if you can help!

Our Spring newsletter is delayed to late summer due to the fire and rebuilding. It will have articles on use of the pump for CAH, nonclassical 3-beta in adult women, and much more...

Thank you for all of your support.

Blessings,

Kelly

Getting Back into the Swing of Things

Hi All,

Just wanted to let you know that we are all hanging in there. This has been an extremely difficult ordeal, but the letters of support, phone calls and the donations have kept us going. I was so anxious and afraid that the losses we sustained in the fire and the costs of rebuilding would put us under, but the support and donations have given us a sense of relief that we can make it after all. Mostly, I have been worried about maintaining our research grant obligations, but am feeling comfortable that we can meet those obligations for 2006. This is such a relief. We also had a few people help with data entry and are almost caught up in re-entering the information into the new database. I cannot thank all of you enough for really pitching in and helping. Please don't forget to re-join if you have not already done so by going to our website, www.caresfoundation.org or calling us at 1-866-227-3737.

We have found a new office and can move in May 1st. It is in Union New Jersey, not far from the office that burned down. The rent is much higher than we had before but was the least expensive office we could find in these several weeks of looking. We just lucked out on the rent in our previous building and cannot find anything nearly as inexpensive. Once we move in, I will give everyone the new address. The phone numbers will stay the same. My son will be happy to have his room back (we took it over for the office) and the staff will be happy to have a real office again. Poor Mariel does not even have a desk and has been using a dresser as a desk. We are going to the used furniture store to buy desks, chairs, filing cabinets and such that have not been donated. The local Junior League is running a drive for office products, so hopefully we will have some paper and pens to use when we move in. We may need some volunteers to help us move in and get settled, so NJ families, let me know if you can help. We have to re-create and print all of our printed materials, booklets, brochures, etc., and have been working on this already. Then we will be ready to roll!

I appreciate everyone's patience in bearing with us if we are not as prompt in getting back to you or answering your emails. We are working under less than ideal circumstances. Also, our Spring newsletter will be delayed until late summer to allow us to catch up and focus on rebuilding. It will feature articles on the use of the pump in CAH management and also 3-beta NCAH in adult women. Also, save the date for our annual conference on Nov. 12th at St. Barnabas Hospital in Livingston, NJ (just outside NYC).

We are having a fundraiser in Maplewood, NJ on June 17th honoring the former NJ Governor, Donald DiFrancesco, called "Celebrating Five Years of Saving Our Babies" celebrating the 5th anniversary of CAH and expanded newborn screening in NJ. Tom Kean (head of the of the 911 commission) is an honorary chair. We need financial sponsors and auction items if you can help.

Finally, I am having the first of two surgeries on Thursday and will be in the hospital for a few days. Meryl Erin and Mariel will be covering for me during the surgery and recovery. The second surgery is scheduled in mid-May.

Last week, they tore down our old office building. It is so sad. But, out of this tragedy, so many blessing have come. First of all, our local community is more aware of CARES and what we do. We have new offices with the ability to add more office space in the future (we have an option on an adjacent space) if we continue to grow. We at CARES have felt so loved by everyone in the CAH community. People who were not very involved before have become more active in CARES. We have found new members--like the woman who lives in the town next door, who has never met another person with CAH and felt so alone. She saw the article about the fire in the local paper.

Through all of awful mess the fire has created for CARES, I never felt alone--anxious and scared, but never alone. I knew that everyone would pitch in and help and it shows that we truly are a community of support and love. You have been so supportive, generous of your time and finances, and kind. Thank you all and may God Bless you as I have been blessed.

With Love,

Kelly

CARES - Oprah's Angel Network

The CARES Foundation has applied for a grant from Oprah's Angel Network in hopes of attaining much needed moneys to rebuild after the tragic fire at CARES headquarters on Febraury 17, 2006. This application also is being sent to the Oprah Winfrey Foundation. PLEASE HELP US get this grant by sending in your stories of how CARES has made a difference in your life, and why you think CARES should receive such an award to Oprah Angel Network.

THANK YOU FOR YOUR SUPPORT!!!

Hugs,

Kelly

Database Ready for Input (en Espanol)

Hola Amigos,

Primeramente, le quiero dar las gracias por su apoyo durante el tiempo más dif?shy;cil de CARES. Estamos desarrollando rápidamente, sin embargo todav?shy;a estamos buscando un lugar estable y económico. Le agradecemos sus notas y donaciones ?#8364;“ nos ayuda a seguir adelante. Meryl milagrosamente "termino" con la base de datos (cinco años de trabajo), y ahora tenemos que empezar la agotada tarea de re-entrar información. Si todav?shy;a no se a registrado, por favor reg?shy;strese otra vez a nuestra página Web, www.caresfoundation.org, en la sección que dice ?#8364;œJoin Us?#8364;?. Estamos trabajando muy duro en proveer nuestros servicios y reconstruyendo a CARES, as?shy; por favor tengan paciencia con nosotros en este tiempo tan dif?shy;cil. Por favor continué teniéndonos en sus pensamientos y oraciones!

Millón de Gracias.

Abrazos,

Kelly

Database Ready for Input (English)

Dear Friends,

First of all, I want to thank you all for your support during CARES?#8364;™ most difficult time. We are making a speedy progress, however we are still in search of inexpensive space. We appreciate all of your notes and donations ?#8364;“ it motivates us to quickly move forward. Meryl has miraculously "finished" with rebuilding the database (five years of work), and we can now begin the strenuous task of re-entering information. If you haven?#8364;™t rejoined on our website, please do so via our Join Us page! We are working very hard in balancing the services we provide and rebuilding CARES, so please bear with us! Please continue to keep us in your thoughts and prayers!

Thanks again.

Hugs,

Kelly

After fire, foundation fights back

Independent Press
After fire, foundation fights back
By PAT KELLEY

MILLBURN ?#8364;” Last week?#8364;™s fire at 189 Main Street destroyed more than just an historic Victorian building. The three-alarm blaze also gutted the national headquarters of CARES Foundation, Inc.

The non-profit organization is dedicated to educate the public and physicians about Congenital Adrenal Hyperplasia (CAH) and help find a cure for the disease that strikes newborns and adolescents and without diagnosis and treatment can lead to their death.

Short Hills resident Kelly R. Leight, who founded the organization in 1999 after a relative was diagnosed with the disease, has temporarily moved CARES offices and staff to her house while she tries to find another building to house the foundation. Ms. Leight said the fire destroyed just about everything, including the group?#8364;™s computer server and database, all its files, patient information, journal articles and physician referral lists.

Strangely enough, what did remain amid the charred ruins were some boxes of rubber Every1cares bracelets that support the foundation?#8364;™s cause, and a wall of photos of the group?#8364;™s clients. Since the office carried only $13,000 in insurance, Ms. Leight said her losses will be well beyond what is covered by her insurance policy.

Despite the lose of almost everything last week, Ms. Leight remained positive as she and her staff kept the foundation going from her Short Hills home. ?#8364;œWe feel very confident we?#8364;™ll have good things ahead of us,?#8364;? she said.

Ms. Leight said she has already gotten offers of help from the community. She said Mayor Dan Baer called around town and was able to find her temporary office space in a Maplewood building owned by township resident Cary Heller. The Goldstein Partnership also offered her space in their offices.

Ms. Leight?#8364;™s rabbi, Daniel Cohen of Temple Sharey Tefilo-Israel in South Orange, showed up at her house last week with two new computers, monitors and printers that he purchased out of his own pocket.

While the short-term offers of help will keep the organization going, what the foundation needs is approximately 1,200 square feet of office space within five or ten minutes of Millburn. The group is also asking for donations to help get back on its feet. Ms. Leight said the Millburn Post Office is holding the foundation?#8364;™s mail until a new location is found, so anyone interested in sending a donation can mail it to CARES Foundation, 189 Main Street, Millburn, NJ 07041 or they can also make a donation through the group?#8364;™s secure website at http://www.caresfoundation.com.

Although their local offices are not large, the foundation brings hope to families around the world that are afflicted by this genetic disorder.

?#8364;œWe are a local organization with a worldwide reach,?#8364;? Ms. Leight said. The foundation?#8364;™s scientific and advisory board is made up of internationally known physicians and scientists and the group sponsors annual conferences at which these experts come and talk to the member families. They also run support groups and provide thousands of dollars a year to fund research for a cure.

Through the group?#8364;™s efforts, all newborns in New Jersey are now screened for 21 diseases including CAH. In the past five years since the screenings began, approximately 50 babies?#8364;™ lives were saved due to early testing, according to Ms. Leight.

CAH is an inherited disorder that affects the adrenal gland and is most often found in newborns and adolescents of Jewish, Italian and Hispanic ethnicity. Classical CAH, the more severe form of the disease, is usually detected at the newborn or early adolescent stage and occurs in one out of 15,000 births. Without diagnosis and treatment, it can lead to adrenal crisis and death. If detected, it can be managed with medications.

To learn more about the foundation and CAH, go to the group?#8364;™s website.

Re-published electronically with the permission of the Independent Press - 3/1/06

Genetic disease charity tries to rebuild after fire

New Jersey Jewish News - New Jersey News Story
Genetic disease charity tries to rebuild after fire
by Robert Wiener NJJN Staff Writer

The CARES Foundation, a worldwide clearing house for help and information involving a disease disproportionately affecting Ashkenazi Jews, is seeking to rebuild itself after its Millburn headquarters was devastated by an early-morning fire on Feb. 17.

The foundation ?#8364;” which aids people with Congenital Adrenal Hyperplasia ?#8364;” lost most of its equipment and computer records when flames rose from the first-floor party room of Casa Colombo, a social club on the ground floor of the two-story wooden building to the CARES offices one floor above. No one was injured in the blaze, which Millburn fire investigators said was ?#8364;œnot suspicious in origin.?#8364;?

?#8364;œIt?#8364;™s a huge setback,?#8364;? said Meryl Stone of Short Hills, the CARES Foundation?#8364;™s associate director. ?#8364;œWe lost all the contact information with our membership. Our members aren?#8364;™t just around here; they are from all over the place. The only way we keep in touch with people is through e-mail and phone numbers. Those are lost. We?#8364;™ll have to piece things back together like a jigsaw puzzle.?#8364;?

?#8364;œThis was our lifeblood,?#8364;? said Kelly Leight, the foundation?#8364;™s founder and executive director. ?#8364;œThis was the way we reached our 2,000 families and 500 physicians.?#8364;?

Lost to the flames were data bases of donors, medical specialists, and 35 domestic and 10 foreign support groups; grant proposals; and information about the group?#8364;™s annual conferences, where families in need of help are connected with physicians who specialize in CAH research and treatment.

The condition, resulting from a hormone deficiency, can trigger the early onset of puberty. Although most of its forms are not life-threatening, the young people afflicted suffer growth problems, hirsutism, acne, baldness, migraines, infertility, and depression.

?#8364;œIt is not curable,?#8364;? said Leight. ?#8364;œIt has to be treated for life with steroids to suppress excess androgens,?#8364;? a course of treatment similar to a diabetic?#8364;™s need for daily insulin.

For Ashkenazi Jews, those whose ancestors came from Eastern Europe, the most common form of CAH occurs in one of every 27 people. For Latinos, the rate of CAH is one in 40 people. In the Italian population, the frequency is one in 300.

?#8364;œWe had notes on families so that we knew what conversations we?#8364;™ve had with them,?#8364;? said Stone. ?#8364;œWe knew what their child?#8364;™s needs were. All of that is lost. You can?#8364;™t put a price tag on it. It is years of information.?#8364;?

In addition, all of the group?#8364;™s financial records are gone. ?#8364;œWe have to start with a brand-new chart of accounts and piece together what we need for the IRS,?#8364;? she said.

As they sat around their temporary office at Leight?#8364;™s kitchen table in Short Hills, a cell phone rang. Stone left the room to speak with the caller from a computer data recovery service. She returned to bring Leight the bad news: Their hard drive data is ?#8364;œunrecoverable, warped from the heat.?#8364;?

So, too, were records and information translated into Spanish to aid Latino families in need and the grant applications that had been prepared but not yet submitted.

?#8364;œWe had a data base that listed all the articles we had on the Web site, indexed by topics and by authors. This was years and years and years of work,?#8364;? said Leight.

?#8364;œWe need financial support, affordable office space in the Maplewood, Millburn, Short Hills area, telephones, computers, and office supplies,?#8364;? said Leight. ?#8364;œWe don?#8364;™t even have a stapler.?#8364;?
Within 48 hours of the fire, her rabbi, Daniel Cohen of Temple Sharey Tefilo-Israel in South Orange, backed his station wagon into her driveway and unloaded two brand-new computers, complete with monitors and printers.

?#8364;œHe?#8364;™s such a mensch,?#8364;? Leight said. ?#8364;œThis is the kind of stuff that makes you cry.?#8364;?

But the foundation still needs laptops, furniture, a fax machine, telephones, and a copier, and, said Leight, ?#8364;œwe are dreadfully under-insured. I?#8364;™m estimating we are $100,000 in the hole.
?#8364;œWe are a small foundation. We don?#8364;™t charge for our services or membership. Our conferences are free. If somebody needs to go to a medical specialist, we get them there. Everything we do has been for free. We survive on small checks our families send us. We need financial angels,?#8364;? Leight pleaded.

?#8364;œBut this isn?#8364;™t going to stop us,?#8364;? said Stone. ?#8364;œWe?#8364;™ve got a server that?#8364;™s being built. We?#8364;™ve got software that?#8364;™s coming. We just have to start from today to figure out how we notify everybody, how we get people?#8364;™s records back in. Then we will need volunteers to do data entry.

?#8364;œWe want to let all of our members and the physicians in this area know to go on our Web site so we can keep in touch and not lose contact with them,?#8364;? said Stone. ?#8364;œOr, they should call us at 973-912-3895.?#8364;?

?#8364;œIf there is a silver lining here, it is the community becomes more aware of this disease ?#8364;” the diagnostic symptoms and where to go for help,?#8364;? Leight added.

Reprinted with permission New Jersey Jewish News

CARES Update--Wednesday and Yesterday were very hard days

Dear Friends,

On Wednesday, we got the final word that the server and back-up hard drive were so damaged by fire that the best data recovery company in country that we had hired could not get anything off of them. Not only did we lose our database of members and physicians, but we lost 5 years of work product and all of our financial data (thank goodness our accountant called this week got us an extension from the IRS).Now we have to try to recreate the lost work and data. This is where you all come in: IF YOU HAVE NOT RE-JOINED ON OUR WEBSITE, PLEASE DO SO! ALSO, ASK YOUR PEDS ENDOS AND ADULT ENDOS, UROLOGISTS, ETC. TO RE-JOIN TOO. If you had family members that received our newsletters (grandparents, aunts and uncles, friends ,etc) ask them to sign up again too.

Since we just did 2 major mailings in the last 3 months, our printer still has the mailing addresses for all of our members and donors, so we can do a snail mailing to our everyone to let them know about the fire and ask everyone to re-join.

Yesterday was a very hard day too. We had to clean out what was left of the office. Since the building has now been condemned by the fire dept. it is fairly dangerous to go into. We hired a professional disaster clean up company to try to retrieve what ever we could. Gratefully, file cabinets actually protect papers pretty well, so many of our papers in our file cabinets were relatively intact--even those that were completely engulfed in fire. While in this age of computers, we do not have everything on paper also, we do have a lot and can begin to try to re-eneter the data into our new server.

I also just found out I need to have some major surgery. I think it is stress related. It has been a hard week.

More later--got to go.

Hugs,

Kelly

CARES Offices Burn to the Ground

My dear friends,

On Friday morning, a fire destroyed the CARES Foundation offices, taking with it everything we had along with our server that contained our database, files and materials. We are just heartbroken. We lost everything. They think the fire was caused by faulty electrical in the building. New photos of the inside of the building will up on the web site soon.

As an aside--our Winter Newsletter is up on the web site. At least we got it up before the fire. I was going to send an email notice to everyone this weekend to let you know, before all of this happened.

Yesterday, Meryl, Adam (my husband) and I went to see the damage. It was scary?#8364;”parts of the floor and walls were missing, but the staircase was intact. The damage to the building was massive. We carefully went up to our offices to survey everything.

In the debris, we saw a glint of silver aluminum under a piece of sheetrock. It was the back up hard drive and it was ?#8364;“marginally?#8364;”intact. It clearly had been burned, was wet, but the aluminum case may have protected the hard drive. So, perhaps some of the data can be saved. We have taken the computers & hard drive to supposedly one of the best data recovery companies in the country?#8364;”they recovered 99% of the data from the Space Shuttle Columbia, but are warned that the costs can be astronomical?#8364;”maybe more than $25,000. So, we will see?#8364;?. Meryl, of course, is great at negotiating prices.

Sadly, we were very underinsured?#8364;”as most nonprofits are, and of course we never anticipated a loss of this magnitude. We only had $13,000 in renter's insurance. We cannot even estimate the costs of rebuilding, since years of work and materials may be lost on the computers. Of course, we lost all of our materials, our article database, our referral info, etc. It will take so many, many hours to recreate all of this. We also have a big grant to the NIH for CAH research we are supposed to fund, so we can't afford to divert these funds.

If you have any suggestions, or any resources we would really appreciate your help. If you know of any really rich angels, we sure could use one right now. Thanks so much for anything you can do.

Also, please immediately go to the web site and re-register and get anyone you know that is affected by CAH or a donor or family member to do the same. This is the information we really need.

Also, please bear with us if we are not prompt in our replies to you. Since our infrastructure is gone and we have so much work to do to get re-settled, our support program will not be what we want it to be for a while.

Thank you all for your good wishes, donations, supportive calls and emails. We really do feel your love and prayers and know that God will come through for CARES and the rest of the CAH community. When God closes a door, he opens a window. We will make it through.

With Love,

Kelly

http://www.caresfoundation.org
Email: kelly@caresfoundation.org
CARES Foundation, Inc.189 Main St. Millburn, NJ 07041(post office is holding our mail for us, so if you are able to help with a donation, we will get it). Our secure web site also takes credit cards.
973-912-3895 and toll free- 1-866-227-3737 phone numbers being re-routed to my home phone (don't leave a message with my kids/husband--I may not get it. Please call back and leave it on the machine).