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
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
