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(when available) while their child receives treatment (bone marrow or cord blood transplant, or pre- or post-transplant check-ups) at the hospital. Since we acquired the apartments, each unit has been occupied on a continual basis, with families staying from two weeks to one year. There is no charge for a family to stay. Donations are accepted if the family is able and desires to do so. It is our goal to provide families with a “home away from home” atmosphere during a very difficult time.

Family Care

Hunter’s Hope is committed to encourage, support, and assist families throughout their journey. Having a support network is one of the most important resources a family needs during this trying time. When families are ready to connect with other families, Hunter’s Hope can help bridge that support with other registered Krabbe and Leukodystrophy families. Our registry is used as a vehicle to introduce families to those living in closest proximity to their homes. It is a relief as well as an encouragement to speak with others who can relate to what your family is experiencing. In return, families may find themselves in a position someday where they can offer support to a family in need.

Families are also faced with questions regarding medical care. Hunter’s Hope offers assistance by helping families connect with some of the most knowledgeable and world-renowned doctors. These doctors may offer assistance in treating a child or guide parents as to what is best for their child at that time. In addition, Family Care offers support in other areas through our Family Programs.

Equipment Exchange

Hunter’s Hope equipment exchange is designed to help our Krabbe and Leukodystrophy children who have adaptive equipment needs. Once your child’s equipment is no longer of service to him or her, please contact our Director of Family Programs to notify us of the available equipment. When another child needs the equipment, Hunter’s Hope will pay the shipping fee to send this equipment to the new recipient family.

Hunter’s Wish Gift

Definition of wish: to have a desire or hope for something unattainable.

A very special part of the Family Programs is our Hunter’s Wish Gift. This gift is granted to a family with an apparent need. Recently, Hunter’s Hope helped a family acquire an appropriate vehicle for their wonderful young son, Dalton, who requires transportation on a daily basis. With the foundation’s assistance, Dalton’s family purchased a handicapped-accessible conversion van. Through the continuous giving of our supporters, Hunter’s Hope is honored to have helped Dalton’s family with a gift that appeared “unattainable.” We are trusting that we can help more families in the future.

What Is Universal Newborn Screening?

Universal Newborn Screening is a state-based public health system that is essential for preventing the devastating consequences of a number of medical conditions not clinically recognizable at birth. All babies born in the U.S. receive newborn screening, yet not all babies are screened for the same diseases. Because the newborn screening requirements differ from state to state and are not universal, children are not being checked for many rare diseases.

Thousands and thousands of babies are born every day in the United States. Most babies appear healthy at birth, full of life and possibility. Yet they could be hiding a rare or potentially devastating disease. By screening every baby at birth, we can prevent serious mental or physical disabilities, even death. Also, by making the requirement universal in every state, we can ensure that no child will have to suffer unnecessarily.

To learn more about Hunter’s Hope, Krabbe disease, or Universal Newborn Screening, visit our website, www.huntershope.org.

Appendix B

The Hunter’s Hope Kids

After news of Hunter’s disease hit local and national media circuits, we were inundated with fan mail from all over the country. The outcry of support, get-well wishes, and prayers was astounding and encouraging. Through the thousands of letters, it soon became very apparent that