Dear Family and Friends,

More than 8 years ago our daughter Claire was diagnosed with ARPKD/CHF (Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis). In that time we have become advocates for the only organization in the world dedicated to this disease, the ARPKD/CHF Alliance.  ARPKD/CHF is still a children’s disease causing high infant mortality and chronic and progressive kidney and liver complications for which there is no treatment and no cure. Currently Claire has 25%-30% kidney function and is within a year or two of needing a transplant. Her liver and spleen are also enlarged and she has developed further complications from that.

The ARPKD/CHF Alliance has been a remarkable resource for us. They have an extensive website and network providing support and medical information to parents like us. They have changed the landscape for this disease by generating medical interest and top research. Their work is not done and there is much to do.

The ARPKD/CHF Alliance initiated the largest clinical research study to date: “Clinical Investigations into ARPKD/CHF” being conducted a the National Institutes of Health in Bethesda, MD. We have participated in this study since Claire was 3 years old making yearly trips to Maryland for a week of tests, procedures, exams, and consultation with top doctors. We're so amazed and grateful for their dedication and hard work with this complex disease. For the last 2 years the Alliance has also funded research at the University of Pennsylvania to identify the underlining mechanism of CHF. The latter was a direct result of generous donations provided by people like yourself, individuals who want to make a difference in honor and recognition of children like Claire.

Investment towards research and the future enables the ARPKD/CHF Alliance to continue their work and to advocate on behalf of this disease. There is an urgent need now, and I’m personally asking for you to help the ARPKD/CHF Alliance by supporting them with a donation today. There is no amount too small, and every donation helps to make a real difference. You can make a secure donation right now on this page.

We appreciate all your support through these years, especially your prayers. Please share this information with others and encourage them to support the nonprofit charity we hold close to our hearts-- the ARPKD/CHF Alliance at www.arpkdchf.org.

Thank you for your love and support,

Linda & Frank Bevec

ARPKD/CHF Alliance | P.O. Box 70 | Kirkwood, PA 17536 | Phone: 717-529-5555/Toll Free 1-800-708-8892 | Fax: 1-800-807-9110 | Email: info@arpkdchf.org | Web: www.arpkdchf.org