去年春天, 卡森·库克(卡森的厨师)有机会实现了一生的梦想, getting an up-close view of March Madness as a student volunteer with the San Diego State University men’s basketball team on its run to the national championship game.

The experience carried even greater significance for 卡森 as someone living with a rare genetic condition. 作为一个孩子, 诊断为粘多糖病I型(MPS I)。, a genetic condition that inhibits one’s ability to break down certain complex carbohydrates and can lead to a number of physical and mental complications. 卡森做运动的时候, 和他生活在一起，我限制了他在球场上充分发挥激情的能力.

“A big part of why I want to work in sports is to inspire other people with genetic conditions and show that, 即使你不在球场上, 还有其他参与游戏的方式,卡森说。, 谁在攻读新闻学学位, 辅修市场营销和历史. “This is something I might not have been able to do if it wasn’t for the 稀有学者计划 enabling me to focus on school and build the connections I’ll need to succeed in this industry.”

澳门正规博彩十大排行平台的 稀有学者计划 是为了向美国提供财政支持而设立的.S. 患有四种罕见遗传病之一的大学生, 苯丙酮酸尿(北大), 巴顿病或软骨发育不全. 自2017年成立以来, 该项目已经奖励了100多美元,000 to 22 students like 卡森 who have demonstrated exceptional leadership and engagement in school and community activities.

卡森, 四次获奖, 在2023-24学年，五名学生中有一名获得奖学金吗.

“在澳门正规博彩十大排行平台, we believe it’s important to find ways to make an impact beyond medicine in our support of people living with genetic conditions,Marni Kottle说, 高级副总裁兼首席通讯官. “We’re inspired by the young individuals who apply for and receive funding through RARE Scholars and are hopeful this program can play a role in helping them achieve their future aspirations.”

北京大学学生管理好过渡时间

The transition to college can be a particularly important time for young people living with PKU, a genetic condition characterized by an enzyme deficiency that inhibits the body’s ability to break down an amino acid found in all foods with protein. People living with PKU limit and closely monitor their protein intake and can face cognitive issues related to the condition.

The changes in routine that come with a transition such as going to college can present new challenges. RARE Scholars recipient Alexa Breske recalls having a conversation with her genetic counselor when she moved away from her home in Wisconsin to attend the University of Minnesota Duluth (UMD).

“就在我上大学之前, I met with my genetic counselor because they get concerned 1when you go off on your own about following your diet, 住在宿舍里, 有这么多选择,Alexa说。, 他现在是马里兰大学的药学博士. “I’ve seen firsthand the challenges people living with PKU can face when they get off track and I knew I wanted to pursue something that would require me to be at the top of my game 100% of the time.”

Alexa says growing up with a rare genetic condition played a role in inspiring her to work toward a career in healthcare. 除了学习成为一名药剂师, she connects with parents of newly diagnosed infants to share her experience living with PKU.

“Just the fact that a program like this exists is added motivation to continue pursuing a career in the medical field and supporting my community,Alexa说.

娜塔莉方式, 东华盛顿大学的新生, is also planning for a career in healthcare as a biology major who hopes to one day become a surgeon. She recalls becoming interested in life sciences during a biomedical science class as a freshman in high school. One of her projects was to research and present to the class on a medical condition – she chose PKU – and from there her ambition to become a physician became clear.

“我读了很多医学书籍,娜塔莉说。, 谁已经通过双学分计划修过大学课程. “The hands-on aspect of surgery – physically fixing a problem someone is having – is really cool to me.”

在州的另一边, 问麦克林托克将 is starting his college journey at the University of Washington. Will没有申报，但对计算机科学和商业感兴趣. A competitive swimmer throughout high school who is considering going out for the Washington crew team, Will knows this is an important time in his PKU journey and looking forward to enjoying all that college has to offer.

“It’s definitely been a big responsibility to juggle sports nutrition and PKU eating habits on top of other changes,威尔说. “This scholarship is another helpful tool in allowing me to focus on school and launching my career while managing my PKU.”

“让我觉得自己被看见了”

今年秋天, 卡森的妹妹莎拉, 谁也和MPS I一起生活, joined him as a RARE Scholars recipient and student at San Diego State University.

“My sister and I are really close so it will be great to have her down here for my last year,卡森说。. “这些年来，澳门正规博彩十大排行平台确实互相依靠了很多.”

莎拉, 谁打算双修通讯和酒店旅游管理, hopes to one day work to create more awareness about MPS and help inspire children and families affected by rare diseases. 小时候，她有机会和美国总统一起度过一天.S. 通过儿童愿望基金会资助国家女子足球队. The feeling of that experience stuck with her and made her want to pay it forward.

She says being a RARE Scholars recipient leaves her with similar feelings of gratitude and motivation.

萨拉说:“在某种程度上，这样的节目让我觉得自己被关注了。. “人们对MPS等遗传疾病的认识仍然不够, so for 澳门正规博彩十大排行平台 to support our community in other ways beyond providing treatment is awesome and inspires me to do more.”