Grace for a Cure
Angela’s House works with over 300 children in our community that have life threatening illnesses, severe disabilities and special health care needs. It is not uncommon for us to see some of the rarest diseases or debilitating illnesses affecting our children. One cannot imagine the bravery of families living with children that have a life threatening illness. Our mission is to help and this drives us to assist families caring for their children at home.
It is important for us to bring about awareness of the day to day lives of these children in our community. We share with you Grace’s Story:
Grace is a beautiful little girl born on November 27th, 2000. She is a happy girl that loves to eat, watch television, and run around with her sister Julia, age 6. She attends preschool daily and loves being around other children. Her favorite foods include rice cakes, apples and ice cream. The Powerpuff Girls, Barney and The Wiggles are her television shows of choice. Julia came up with a game she calls “chase” where she runs around the house while Grace chases her laughing hysterically. They have also been playing a lot of hide-and-seek lately.
Grace was diagnosed with a rare genetic disorder called Sanfilippo Syndrome. Sanfilippo Syndrome is a mucopolisaccharide disorder and is also known as MPS III and is inherited by both parents. Mucopolisaccharidoses are genetic lysosomal storage disorders caused by the body’s inability to produce specific enzymes. Enzymes within the body break down and recycle cells after the cells die. Those with the disease are missing the enzyme which prevents the normal break down and recycling of cells. As a result, the storage of these cell deposits gather in virtually every cell of the body. As a result, cells do not perform correctly which causes progressive damage throughout the body, including the heart, liver, bones, joints, respiratory and nervous system.
Children with the disorder appear normal at birth and seem to develop typically for the first year or two, but as more and more cells become damaged symptoms become evident. Early symptoms are lack of sleep, restlessness, and the strong desire to chew on anything. Later, the inability to toilet train, loss of speech, chronic diarrhea, and eventually mental retardation. Finally, the inability to walk, swallow and entrance to a vegetative state. 1 in 25,000 live births result in some form of mucopolisaccharidoses with most succumbing by the age of 20. There is no cure. Our goal is to contribute as much as we can to help fund research toward a cure for this devastating disease.
Our goal is to contribute as much as we can to help fund research toward a cure for this devastating disease. Researchers have been working on this exact syndrome, Sanfilippo Disease Type B. They have found a way to duplicate the enzyme which Grace is missing, and have successfully used it in other types of MPS disorders. In Grace’s case the disease attacks her brain. Researchers are currently working on ways to break through the “blood brain barrier” so that the enzyme can be administered where it is needed.
It is incredible how much progress can be made toward curing a disease when there is public awareness and significant funding available. As of yet, there is not enough of either of these things for our Grace and others like her. We plan to help change all that…Grace’s Parents. For more information you can visit www.graceforacure.org.
Message from the Executive Director
We are still ringing with excitement over the opening of Angela’s House II in Smithtown. The children in this special home are really settling in. What a great opportunity for these families. I continue to work with the Department of Health, the Office of Mental Retardation and Developmental Disabilities, politicians and many other voluntary agencies and groups to come up with more programs and options to help parents in need. At the top of the list are long term care opportunities for ventilator dependent children and a respite home to offer short term care or relief for the families caring for their children at home.
We did have some good news in home care. NYS has opened additional spots to help families with the Care-At-Home Program. This program becomes a life support and backbone to help keep medically fragile kids home with their families. We help over 100 children with this program. Our nurses are able to visit families and help them coordinate the extensive array of services that are needed to support the children at home with the parents. It is a huge undertaking for both the parents and our nurses to make the family’s home environment as safe and comfortable as possible.
It means a lot to us as we try to help families as much as we can. We will be adding a new fund-raiser next year. We are working on a dinner on March 30, 2006. This fund-raiser will help us with our mission to identify new families and get help to them as soon as we can.
Angela’s House helped Kyle get an adaptive swing
Be sure to check for new updates in our website
Go to the Homepage and click Current Affairs, in the top left corner, for recent updates and activities. You can also check under Events to see information on upcoming golf outings, dinners, etc.
Angela’s House helps Allison with a stroller and ramp
Eagle Scout Project
Boy Scout Brian Abramowitz of Troop 214 will be doing his Eagle Scout Project at Angela’s House II in Smithtown. Brian will be putting up fencing and landscaping around each tree well of Angela’s House.
Hauppauge High School Honor
Students Offer a Hand
This group of students went above and beyond to help with work around Angela’s House II
Commerce Bank Donation
Commerce Bank made a donation to Angela’s House during their grand opening party at their new location in Smithtown on Saturday October 22. The Smithtown manager Michelle Zeiger graciously handed a check for $750 to Bob Policastro. Also on hand for this event was NYS Assemblyman Michael Fitzpatrick.
Fall Golf Outing
The weather was perfect with a large crowd of golfers to support us. Our golf outing was moved to Fox Hill Golf and Country Club and they did an amazing job with our guests. People commented all day on the beauty of the course. The highlight and special moment of the day was when I got into a golf cart after 3 hours of working the outing. I cut across a hole and drove up to the first group I saw. I just wanted to get on the course to say hi to everyone and thank them for coming. The first group I came up to was the Steimel Family. I have known this family for the past 15 years. This family had recently lost their son Patrick. As I pulled up, Patrick’s dad said he liked and appreciated the dedicated tee sign for Patrick. I realized I had inadvertently come to the hole that was dedicated to Patrick, with the family there at that moment. I believe in Angels and this coincidence was too great to comprehend.
The cocktail hour and dinner was perfect. We celebrated the opening of Angela’s House II with a special CD presentation. The spirit and love in the room was overwhelming.
We continued our festivities as I presented a superb photo print from Angela’s House, made by Stanley Photography, to the Pace family. The photo print was in memory of Billy Pace. The night was topped off with a large assortment of gifts that we raffled off. It was a special night making us look forward to next year.
Coldwell Banker Mortgage Hole-In-One Sponsor
Your Gifts Make a Difference
The holiday season is a special time of year when we feel the joy and happiness and good health we have. We would like to bring this joy and happiness to the special children and families we work with. In order to do this we have adopted an Annual Giving Campaign so that we can successfully reach out to help the ever growing needs of families with medically frail children in our community.
The greatest gift we can give is one that helps others. Your donations will allow us to help defer the financial burden our families experience with the day-to-day needs each child has. We can help families purchase medical supplies, special food supplements, medical care, therapeutic equipment and more. Thank you for taking our children in to your heart.
Angela’s House is a 501(c)(3) non-profit organization;
your gift is tax deductible to the full extent of the law
My check for $______________ payable to Angela’s House is enclosed
Angela’s House helps Christopher with a pool lift
I would like to charge my gift of $_____________ on my credit card
Card Number________________________________________/____ [ ] Visa [ ] MC [ ] AmEx Exp Date
Angela’s House helps John with an adaptive bathroom
HRH Construction Comes to the Aide of Angela’s House
HRH Construction LLC sponsored a golf outing on July 25 at Trump National Golf Club where part of the proceeds graciously went to Angela’s House. The outing was magnificent as we all were treated to the beautiful new Club House that HRH recently built.
Gregory Cuneo, Chairman of HRH, ran an amazing, well planned event.
Left to right: Bill Rancic from “The Apprentice”, Bob Policastro, Herb Williams-former NY Knick & assistant coach, Michelle Iovane of HRH, Harry Carson-Former NY Giant, Gregory Cuneo-Chairman of HRH Construction
March 30, 2006
Watermill Restaurant & Catering, Smithtown, NY
Information and sponsorships for the dinner can be found at www.angelashouse.org or by calling (631) 979—2620