The Whitney Fund
Dr. Joseph Ashburn is not your ordinary neurology resident. The residency program in Neurology at Wake Forest University Baptist Medical Center involves four years of long hours in the hospital, the general neurology clinic, and specialty clinics. Most residents would opt to spend a rare, free Friday afternoon away from the hospital, but not Joe.
On April 5, 2010, Joe spent his treasured Friday afternoon in a specialty clinic that treats patients and families afflicted with Huntington’s Disease (HD). He wanted to see Whitney, a very special patient, whom he’d met while on rotation in the pediatric neurology clinic. Fifteen year-old Whitney had recently been diagnosed with juvenile HD and is the fourth generation in her family to develop the degenerative neurological disorder.
Sarah Dawson, North Carolina’s first HD social worker, was at the clinic that Friday also. Sarah met Whitney and made an immediate connection with her. Together, she and Joe began working to find a way for Whitney to attend the 25th Annual Huntington’s Disease Society of America (HDSA) National Convention in Raleigh, NC.
Attending the HDSA National Convention affords young people the opportunity to engage with the National Youth Alliance (NYA), a group formed for youth affected by HD that cultivates relationships and support among participants.
As the convention neared, Sarah was unable to secure funds for Whitney to attend convention. On a lark, she asked the North Carolina Center for the Care of Huntington’s Disease (NC-CCHD) for help. Within 3 days, NC-CCHD created “The Whitney Fund” and Board Members and friends contributed over $1500 to get it started. All accommodations, meals, registration fees, and even a dress for the Gala were purchased for Whitney. And Joe, Whitney’s first advocate and friend, offered to drive Whitney and her grandmother to convention. It was no small task to arrange time away from his clinical responsibilities, but he wanted to deliver her to Raleigh himself.
The special day finally arrived! As soon as Whitney attended her first meeting with NYA, she discovered the magic of meeting people who understood her, embraced her, and quickly became her friends. Now Whitney talks with her HD friends often, and finds comfort and support in knowing people who understand her feelings.
But convention was just the beginning. Sarah has continued to work with Whitney’s family, and arranged dependable transportation from her home to the HD clinic and her pediatric neurologist. Sarah coordinated a case manager through her pediatrician’s office that visits her regularly, assuring ongoing communication between the family, the school, her medical providers, and community organizations that are now involved in her care. Sarah located other nonprofit organizations willing to help with meals and school supplies. Joe contacted the “Make a Wish” Foundation, so Whitney’s next adventure will be on a cruise ship!
Whitney is just one of many people in North Carolina who live with HD. Each person has a story. And many people need a “Joe” in their lives to recognize their uniqueness, and the urgency of their need. Although Whitney’s situation is heartbreaking because of her youth, the illness of her mother, and the social challenges her illness presents, she has inspired many people to share their good fortune with her and to bring the joy of acceptance and connection into her life. This holiday season, please consider sharing your good fortune, and bring hope into the lives of other Huntington’s Disease patients and families in North Carolina.
