MPDCI has provided amazing services to our two children with cystic fibrois, who are now young adults. Summer after summer our family has been the beneficiaries of their generosity in providing tickets to places such as Michigan Adventure and Frankenmuth. For the past couple of summers, my youngest daughter Jamie has been able to attend cross country training camp. We are not a family of means, and thee activities are luxuries we most likely would have forgone otherwise. Casandra, our older daughter, has benefited semester after semester from the educational grant that MPDCI has provided for her. The people at MPDCI have such great hearts. Whenever we apply for a grant or scholarship, they communicate so professionally, and yet so compassionately. They have been patient when we have erred and they helped us to know what we needed to do in order to receive the grant/scholarship we were applying for. I guess, in a nutshell, it is obvious that they are passionate about assisting the CF community in as many ways as possible, and are delighted each time that they do just that. Because of distance, we do not actively engage in social activities they provide, and have participated in very little of their fundraising events. Yet, anyone I have ever talked to in that organization has treated me wonderfully. They are whole hearted, to be sure. It would be wonderful to see this organization recieve this grant, to encourage them for their great heart/efforts, and enable them to do even more. Children and young adults with CF often appear rather "normal" to most people, but to those of us who live with someone with CF, we know their daily challenges. But although we love them and seek to help them in everyway possible, we can never entirely understand what they go through. How grateful we are for an organization like MPDCI who heeps encouragement on these dear invididual.
My son has CF and MPDCI has helped him to not feel so isolated. With CF the patients are not to be near each other so often you feel like you are alone. MPDCI just reinforces that this is not something that he is the only one going thru.
Every summer when I was younger I would receive wonderful care packages from MPDCI. They were always full of fun toys from McDonalds gift certificates to craft kits. They were a great way to start the summer. Another thing about MPDCI I love is the family trips to Frankenmuth or Michigan Adventures Water Park. My family enjoyed taking these trips and having a break for the six of us was always nice. The digital cameras MPDCI provided were great for capturing the days memories. Now that I'm older, I receive grants from MPDCI for college. They come in handy, especially in this economy. I also look forward to joining MPDCI in some of the great opportunities they have for (young) adults with CF. MPDCI has been a great support for me personally and I love to wear my Beaver shirt!
MPDCI helped a very dear friend of mine receive a grant for transplant and is now living a more full life. I have watched this girl suffer since childhood and I don't think she could have survived without their help. We live in rural Michigan where health care is basic and patients with special needs have a more difficult road to go. She also speaks often about the connections she has made with other patients through your community. These connections have aided her in coping with her trials. All in all MPCDI needs to continue to operate.
MPDCI has been in our lives since 2004, sending our son, Brian to goalie camp every summer through '07 while he played ice hockey. We have enjoyed summer adventures and next month will be going to Chicago's Shedd's Aquarium, as we are attending orientation at Columbia College where Brian will be a freshman this fall. Over the years, MPDCI has sent care packages with gifts that brighten up the day. Their newsletters and personal connection with Brian has been a huge support for us all. I'm grateful for all their kindness and generosity as they help those families with a child with cystic fibrosis.
Michigan Pulmonary Disease Community Inc. is a great organization that brings smiles to faces of children who spend each day facing a life-threatening disease, and often find themselves undergoing proceedures, surgeries, treatments or hospital stays. My grand-daughter spends an average of three hours per day having medical treatments, and another chunk of time trying to eat enough high calorie food to maintain her weight and strength to face the next crisis. MPDCI encourages the kids with gift cards when they comply with their medical regimen, and a few times a year they send out care packages plus tickets to help them enjoy a summer family outing. It means a lot to know that someone understands and cares.
OUTSTANDING. This organization was founded by a small group to meet the needs of a few kids with CF to have a summer camp experience. It grew into a camp that met the needs of over 100 campers and as many volunteers. The only funds were those raised by the volunteers until a local group donated golf outing proceeds. When the camp closed, due to CDC policies, this group re-invented itself to meet the needs of kids with CF. Its many activities include Care Packages to younger children, outings for adults with CF, education and a Summer Adeventure for CF families, just to name a few.
My son Darin had Cystic Fibrosis and he had no friends or any peers he could relate to...When he turned 8 yrs. old he started at Camp Onkoi Beneck where all the kids with CF were made to feel normal. He had the best time of his life there with the projects, camp themes and friends and peers just like him. The only thing he looked forward to every year was camp and even when he passed away in June of "96" he was packed and planning his week away from us.
I was invited to particate in the MPDCI Camp Onkoi Benek in 1977. I never expected to develop some of the most important friendships I would have for the rest of my life. It led to 15 years of providing care in a CF Foundation approved Center that provided and continues to provide care for military dependents affected by Cystic Fibrosis. Some of the most profound relationships with patients and their families who have become friends have directed my patient care in many parts of my life. I met some of the most insightful young people I can imagine meeting because of my involvement with care of patients and families affected by Cystic Fibrosis. MPDCI and Camp Onkoi Benek have had a profound effect on my life and my profession.
When you hear the words "your child has cystic fibrosis" things seem bleak. You don't know who to relate to what to do...how are you going to explain this to your child as they grow older? When MPDCI came into our lives, it was awesome. They offer a community of people who really know just what you're going through. When my daughter receives a package in the mail from MPDCI it brings the best smile to her face. To receive the newsletter in the mail, is AWESOME! That gives you a glimpse into the lives of the other people living and coping with this devastating illness. The staff here should be commended for the joy and happiness they bring to the cystic fibrosis community.
MPDCI has been a part of our lives for many years now. Whether it was ALL the awareness that they bring to all with CF cope with it, or the Camperships to help fund a CFer the "opportunity" to attend a camp, a chance to just be a "kid" for a moment and a family not overwhelmed by the expense of a camp along with the countless bills for hospital visits, medications,etc. For these kids that camp experience is priceless..I knwo for both my boys, who live with CF, they have so many memories of this each year! Then it dirving force and the love and compassion that makes MPDCI what it is ..They have always been a GREAT resource of wonderful people that come from ALL different aspects of the CF world, whether they are a caregiver, parent,nurse,therapist,or even a CFer themsevles. They have so much knowledge to share. The CF community is so fortunate to have a group like this with all these wonderful resources available to CFers and their families.
This organization is fantastic! They provide information on dealing with CF, retreats, and financial help. Michigan is so lucky to have such an organization.
While in nursing schoolin Coldwater, MI, Bruce Gregory, RRT, came to our class and asked, "Who wants to go to camp?" Immediately, half of our numbers agreed and went on to experience one of the most phenomenol weeks of our lives. As rookies at the the Clear Lake venue, Camp Onkoi Benek (to conquer tomorrow), we were taught the ropes, teased, tricked and experienced tender moments that for me, anyway, have remained with me to this day.
They help with whatever needs arise for those who are affected by cystic fibrosis. They found me a tredmill for exerciseing my lungs and they delivered it for free. They have helped numerous people with needs from extra food to a refrigerator. I highly recommend MPDCI to anyone who has Cystic Fibrosis.
I have a son with CF and they have sent him to camp and sent care packages to him when he was in the hospital. The staff and board members are very friendly and go out of their way to help.
I just want to say, I think it is wonderful what this group does for cf patients. We always have boxes lined up in our living room to send out to children in the hospital or for their birthdays. My mom said besides trying to make the life of a cf patient, the thing that keeps her going is the letters she gets back from the kids (in their hand writing). One fall back I believe this organization is they don't have a lot of funding. Trying to portion out the money to each group. Giving donations to parents needs of needing help with bills. To giving kids adventures.
Our family loves MPDCI!! Our daughter has Cystic Fibrosis and is part of their CARE packages program. She loves when she gets her special delivery and it lights up her whole world!! They do so many fun and encouraging things for children to help keep spirits up, this helps us parents too!!!
MPDCI is a fabulous non profit. They are organized. They do so many wonderful things for our girls. They remember their birthdays, offer camp scholarships, give a wealth of information and are terrific to talk to. Any financial help given to MPDCI would enhance the lives of everyone in Michigan who has CF.
I recently planned and attended an event at Dave and Buster's for adults with Cystic Fibrosis. We had dinner, played games, and everyone shared stories about themselves.
MPDCI used to provide a camping experience for children with cystic fibrosis who were not able to attened "normal" camps due to their therapy/treatment needs. Due to potential spread of infection, the camping experience for them as a group (we had 125 campers with 100 all volunteer staff at one point) we had to come up with other ways for them to support each other and have "normal" experiences. Now MPDCI provides special activities for adults with CF and also provides CARE packages for up to 220 children with CF. These packages brighten their day, let them know they are not alone and provide means to connect with others with CF. "Scholarships" are provided for education, recreation, and even for lung transplant children since so many expenses are not covered by insurance. In addition, a newsletter provides latest updates on CF treatments and acknowledges birthdays and unfortunately, deaths of MPDCI children. This organization provides so much for children and adults with CF, and continuously works very hard to raise the funds to support all these activies. It is composed of all volunteers, including some board members who have CF. There is so much it does that a short review cannot begin to capture the support and positive outlook it brings to these children (and their families)!
My 20 yr. old daughter with CF has benefited immensely from MPDCI services. With MPDCI's help she attended summer camp for several years as a child, received summer outing packages and now as a young adult is thankful for a educational scholarship MPDCI provides her. After several years of receiving services that MPDCI has given us, I decided to join the Board and try to pay it forward. It is a wonderful organization!
The many things this organization does for people with Cystic Fibrosis is so great. My sons love getting the packages that they send.