You can help Connecting Families Urea Cycle Disorders Foundation continue Connecting Families to each other by providing for these affected children and adults with your financial support. Your gifts and donations help us to keep bringing rare families together by making possible the Meetups, Kids’ Camps, and Scholarships provided. There is a tremendous need among this rare community for connections to each other, and for opportunities to live as regular a life as possible. Throughout each year, our mission is to continue providing for them, but we need your help. We at CFUCDF feel strongly that bringing those with this rare disease together is how they receive the tools, support, and encouragement, which gives them a greater confidence to fight this battle as a family unit instead of having to fight it alone. By awarding scholarships and financial awards, we put those tools in their hands to fight for their futures. Please consider giving a financial gift today in support of these families.(donations are tax deductible).
Urea Cycle Disorders (which occur in the liver) commonly cause elevated ammonia levels in the blood (hyperammonemia) caused by a genetic error in the DNA which affects how the liver processes protein. Protein is naturally occurring in so many of the foods available for human consumption that most UCD patients live by a restricted diet of protein intake, along with a careful regimen of amino acids, supplements, and medications called ammonia scavengers. Each patient must have determined for them their proper balance of each of these components that best supports an individualized maximum quality of life. Control of our diets is, in itself, complicated and requires a strict adherence to certain dietary allowances formulated by a metabolic team of professionals. Since hyperammonemia is caused by the inability to process protein properly, the wrong food eaten can come with serious health consequences. Inability to act quickly can range from a brief hospitalization to more severe cases involving brain damage, coma, or death. In many cases, strict adherence to the dietary regimens is not enough to stop hyperammonemia. That’s what makes this disease so scary, it can strike at any time without warning, even when you’re doing everything right. Because of this genetic error, UCD’s can have a devastating impact on quality of life. Over the years, many have not survived, especially newborn babies presenting at birth who sadly go undiagnosed. For those who do survive, they must face each day with the fear and anxiety that the next elevated ammonia episode could take their life. For most severe cases, a liver transplant may be necessary.
Protein intake is vital for life and growth. Having a UCD is living with a rare disease that means eating the very thing needed for life and growth comes with the possibility that it can be equally dangerous and have serious negative consequences. The exact effects of eating a certain amount of protein, taking medications, and an individuals level of enzyme activity is not completely understood. There ar 6 subtypes of UCD, and what works as treatment for one patient could be completely different for another, even if they have the same subtype. There is currently no cure.
Connecting Families Urea Cycle Disorders Foundation is all about the human element. Reaching people with faith, hope, and love are the keys that can open doors to a more positive outlook and a stronger family support system through this community. We strive daily to improve the way this rare community reaches out and engages with each other. Most of these rare warriors have never had the chance to meet with another who suffers from the same disease, and in our own personal case, after losing two sons to this illness, we were so isolated and alone because there were no answers, and no others who could relate to us. We spent many years trying to find others, only to be frustrated by many fruitless searches. But, we never gave up, and we eventually we found people just like us. We have spent over 20 years making connections within the Urea Cycle Disorder community, and since then we have had the privilege to connect families from around the world within our organization and FB support group. Bringing the human connection can bring so much comfort and encouragement when it comes from someone who fights that battle everyday just like they do. My family has 2 affected with a UCD, and we will never stop being a hand of hope to those in need. With your help we can continue providing the opportunities that give those affected the access to presentations by geneticists, dieticians, and various speakers during our meetups and our kids’ camps. All of this comes at no charge to them. In order to continue making this possible, it takes a village, along with your generous financial support to keep it cost-free to these families. Education, awareness, support, resources, and in our opinion, the human factor, are all critical elements for families with a UCD.
In April 2018 we hosted the first ever camp called UCD Kids’Camp 2018 (see tab on left menu). It was an opportunity for parents and children to come together and meet others with the same illness, challenges, and daily differences and similarities in one place. These families received a place to go to learn there is a place where they can receive hope, and it didn’t come from the camp, it came from each other. There was such a joy and sense of unity at our camp. It was amazing to see new connections made . It was even more amazing to see the UCD kids running and playing with other UCD kids. I think at some point, however brief the moments, each parent witnessed their kids having such a good time, I think they forgot their kids were sick. It gave us hope to see they had hope too!
As you know, these wonderful events and programs don’t happen for free. Our foundation has never charged anyone a fee for events, and in many cases, we have given travel stipends and paid hotel costs for families to attend. These things do take considerable time, effort, and funds. Please consider supporting us with a donation today so we can keep providing these families the things they deserve at no cost to them. Your support helps keep our events and camps going so these families never have to feel isolated and alone ever again. 100 percent of your donation goes to directly fund costs and events for this UCD community.
Over the years we have learned this . . .
“People don’t care how much you know, until they know how much you care”.
With your generous support you can show how much you care. Together we can meet those needs and bring more hope to friends and family members affected by a UCD.
Please support those with Urea Cycle Disorders by giving today!
Thank you and God bless,
-Connecting Families Urea Cycle Disorders Foundation
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