{"id":50936,"date":"2021-04-29T13:25:22","date_gmt":"2021-04-29T17:25:22","guid":{"rendered":"https:\/\/www.med.unc.edu\/medicine\/?p=50936"},"modified":"2023-06-06T18:08:45","modified_gmt":"2023-06-06T22:08:45","slug":"teen-raises-funds-to-research-rare-disease","status":"publish","type":"post","link":"https:\/\/www.med.unc.edu\/medicine\/news\/teen-raises-funds-to-research-rare-disease\/","title":{"rendered":"Teen Raises Funds to Research Rare Disease"},"content":{"rendered":"
\"petals-and-produce\"<\/a>
Petals and Produce is a family-owned business in Eastern North Carolina growing vegetables, flowers and plants, offered through seasonal CSA programs.<\/figcaption><\/figure>\n

There\u2019s a mutual commitment between community supported agriculture and life in a community. The farm feeds people fresh food and, in turn, the people support the farm. But it\u2019s not always about veggies and flowers. The allegiance can be the heart of a healthy community like in Little Washington, where Petals and Produce, the VanStaalduinen father-son business, has served Beaufort County for 21 years. When Tom\u2019s wife Heather faced a rare, hard-to-diagnose illness, their daughter Hannah had an idea. The community responded.<\/p>\n

\u201cHannah’s commitment and perseverance is incredibly inspiring, and makes us all want to work harder to find the cause and cure for this disease,\u201d said Dr. Ron Falk.<\/em><\/p><\/blockquote>\n

During the summer of 2019, Heather began to notice extreme foot pain that progressively traveled up her body and attacked her joints.\u00a0Then the fatigue came and she was losing weight. She was bedridden for nearly two months with no clear diagnosis from local doctors. It wasn\u2019t until January, 2020, when Heather was hospitalized for over two weeks, that the family got answers, announced on the Petals and Produce Facebook page.<\/p>\n

\u201cOur\u00a0fierce\u00a0fighter Heather has been sick since September and her amazing medical team was finally able to make a diagnosis after two weeks in the hospital.\u201d<\/p>\n

Her medical team at East Carolina University\/Vidant Medical Center in Greenville, NC, had determined Heather had granulomatosis with polyangiitis (GPA), formerly known as Wegener\u2019s vasculitis.<\/p>\n

Coming to Chapel Hill<\/h3>\n

Heather began to improve with treatment under Vidant’s supervision. Following her discharge, she learned that the UNC Kidney Center in Chapel Hill is a center for excellence for glomerular disease and vasculitis<\/a>, under the leadership of Dr. Ron Falk<\/a>. \u00a0She decided to establish joint care at UNC so that she could contribute to the ongoing, longstanding research in vasculitis.<\/p>\n

\"hannah-donation-check\"<\/a>
Hannah VanStaalduinen (center) presented a check to the UNC Health Foundation, with her mom Heather (left) and Dr. Vimal Derebail.<\/figcaption><\/figure>\n

During her first visit, Heather met Dr. Vimal Derebail<\/a>, associate professor of medicine and one of the faculty in the UNC Glomerular Disease and Vasculitis Clinic.<\/p>\n

\u201cI was awestruck at Heather\u2019s incredible energy,\u201d said Dr. Derebail. \u00a0\u201cShe had more motivation as someone just recovering from a life-threatening illness than most people when they\u2019re well. Many of her questions focused on what was needed to get better and back to normal but also on what to do to be able to help others with this disease.\u201d<\/p>\n

GPA causes inflammation in various tissues, including the blood vessels. It can also impact parts of the respiratory tract and kidneys. It is a rare disease, found in an estimated three out of 100,000 people, and at present has no definitive cure.<\/p>\n

Heather’s daughter Hannah wants to change that.<\/p>\n

\u201cI\u2019ve always liked missionary work and have led local missions in my county,\u201d said Hannah, who is a junior in high school thinking about becoming a nurse.<\/p>\n

Growing up in the Dutch family’s business, with four brothers, in a community of faith, shared responsibilities instill values of charity and generosity. Hannah helped raise funds to dig two wells in Uganda. She also held a yard sale to benefit Bright Futures, an organization that supports education in Beaufort County Schools.<\/p>\n

\u201cI want to do everything I can to help out and do my part,\u201d she said.\u00a0\u201cI knew I wanted to hold a fundraiser that would go toward research of the disease.\u201d<\/p>\n

Fundraising for Research<\/h3>\n
\"yardsale-tshirts\"<\/a>
Altogether, Hannah raised $1,500 by holding a community yard sale and selling t-shirts.<\/figcaption><\/figure>\n

Hannah planned a yard sale. She asked people in the community to donate items, and she promoted the event in the family\u2019s stores in Pinetown and Washington. People in the community responded, dropping off everything from toys, clothing and kitchen items, to sports equipment and furniture. On March 23, when Heather had a follow-up appointment with Dr. Derebail, Hannah came, too. She presented the UNC Kidney Center with a check for $1,200.<\/p>\n

However, Hannah wanted to do more. She sold t-shirts at the family\u2019s store, with uplifting messages and inspiring scripture, and she raised an additional $300.<\/p>\n

\u201cWhat feeds Hannah\u2019s soul and captures her attention is loving and serving others well,\u201d Heather said. \u201cHer own ambitions and goals have been surpassed by the support of our loving community. Great things have come about and burdens have been lightened since my sickness and diagnosis of GPA, because of my amazing family, friends, and community. Hannah\u2019s roadmap for life is love, and I can\u2019t wait to see where the roads lead her in the future. \u201c<\/p>\n

Today, Heather\u2019s vasculitis is in remission, but Hannah says she won\u2019t be stopping, and plans to do more. \u201cThere is no cure, so there\u2019s no reason to stop yet.\u201d<\/p>\n

Dr. Falk described her as an extraordinary teenager. \u201cHannah’s commitment and perseverance is incredibly inspiring, and makes us all want to work harder to find the cause and cure for this disease.”<\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

There\u2019s a mutual commitment between community supported agriculture and life in a community. The farm feeds people fresh food and, in turn, the people support the farm. But it\u2019s not always about veggies and flowers. The allegiance can be the heart of a healthy community like in Little Washington, where Petals and Produce, the VanStaalduinen … Read more<\/a><\/p>\n","protected":false},"author":69419,"featured_media":50941,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[645,101,2],"tags":[630],"class_list":["post-50936","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gifts-at-work","category-nephrology","category-news","tag-630","odd"],"acf":[],"yoast_head":"\nTeen Raises Funds to Research Rare Disease | Department of Medicine<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.med.unc.edu\/medicine\/news\/teen-raises-funds-to-research-rare-disease\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Teen Raises Funds to Research Rare Disease | Department of Medicine\" \/>\n<meta property=\"og:description\" content=\"There\u2019s a mutual commitment between community supported agriculture and life in a community. 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