Nathan Grant, an undergraduate MCB concentrator, chose to study biology for very personal reasons.
“My inspiration comes from my twin brother Nik, who has a rare, genetic, lysosomal storage disorder called Mucopolysaccharidosis (MPS) II, also known as Hunter syndrome,” Nathan said. “MPS II is caused by a deficiency in an enzyme responsible for breaking down sugars called glycosaminoglycans. I chose to study MCB to learn about the biological basis of MPS and other related disorders.”
Many students who are interested in studying medicine have similar stories, but Nathan has taken it further than most. In May 2015 he started the organization Siblings with a Mission, which is dedicated to supporting the siblings of people with special needs. The organization is a way for caregiving families to find support, share stories, and participate in conferences and workshops with other families around the world. The idea came about from Nathan’s own experiences growing up in Cincinnati, where his family’s unique challenges sometimes made him feel isolated.
“When we were three, Nik received two bone marrow transplants,” Nathan said. “Because my brother needed a lot of help from my parents, I stayed at a hotel nearby with my grandparents. I did not see my parents very often, and I did not know much about what was going on with my brother. This trend continued during my childhood, but for very understandable reasons.”
When Nathan was older and better able to help his parents with Nik’s care, he started attending conferences on MPS. These conferences were mainly focused on the patients, but for the first time Nathan was able to connect with siblings of patients who has shared similar experiences. It was at these conferences that he got the idea for Siblings with a Mission, and was able to start recruiting other siblings from the MPS community. He also learned about similar organizations that were happy to support his mission.
“The Sibling Leadership Network and the Sibling Support Project are two national organizations that also offer support to siblings,” Nathan said. “We are partners with these organizations and we work together to reach our shared goals of supporting siblings. Both of these organizations were present at our Sibling Symposiums and helped spread the word about our events. The Executive Director of the Sibling Leadership Network also gave a keynote address at our second Sibling Symposium.”
Although Nathan’s group started in the MPS community, it quickly grew to include all siblings of people with special needs. Harvard sophomore Josh Glauser, current Vice President of the organization, has a brother with autism.
“It inspires me when I get messages from siblings and families explaining how much they benefit from our resources,” Nathan said. “One sibling from England has a brother with MPS and told me she had never met other siblings who have brothers or sisters with the same condition before. Another mother from Ohio told me that our sibling conferences helped her daughter find ways to communicate her feelings at home and find support. It has meant so much to give siblings a voice to share their experiences.”
Nathan’s efforts have not only helped bring together a community of caregivers, but have also impressed the MCB faculty.
“In my very first conversation with Nathan as a student in MCB 60, he expressed excitement about the connections we draw in the course between cellular biology and molecular medicine,” said Dominic Mao, Assistant Director of Undergraduate Studies for CPB and MCB. “Over the numerous conversations we had when he was enrolled in the course and as an MCB concentrator, he told me his story and has kept me abreast of the progress he has made towards his initiative. I was very impressed to hear about what Nathan has already achieved and the dedication with which he is spreading the word about the need for support and resources for caregivers.”
Although Siblings with a Mission is not the only organization of its kind, Nathan is proud that the group’s executive team is made up entirely of students. He is also focused on offering support to younger siblings, especially teenagers, who he says can sometimes be overlooked.
One of Nathan’s favorite resources of the group is the online story column, which offers a rare opportunity for siblings to share their experiences without judgement.
“Often siblings do not voice their needs out of respect for the large amount of support their brothers or sisters require,” Nathan said. “By sharing their stories on Siblings with a Mission’s website, siblings can communicate their experiences and connect with other siblings who have similar stories.”
So far the group has organized two sibling conferences, most recently in July 2018. Besides the primary goal of connecting and supporting siblings, Nathan was eager to raise awareness among healthcare professionals about the importance of sibling support.
“Very few doctors recognize and know how to support siblings,” he said. “Yet siblings are deeply involved in the care of their brother or sister, and often become primary caregivers. By sharing their stories online and in presentations we organize, siblings have been able to teach healthcare providers about how illnesses can affect siblings.”
Nathan’s goals for Siblings with a Mission include expansion, and he hopes to organize more conferences in multiple locations. He also hopes to partner with more hospitals to build connections with healthcare workers in order to improve support for siblings.
“There is so much power in a sibling’s story, and I cannot wait to see the impact that will come from sharing more siblings’ stories in the future,” he said.
For now, Nathan is working toward his MCB concentration, with a secondary in Social Anthropology.
“I believe that by supporting family members, families will be able to provide better care for their loved ones who are ill, which may lead to better health outcomes for patients,” he said. “I want to pursue a career in medicine and health care in the future. Molecular and Cellular Biology and Social Anthropology will give me an excellent background to reach my goals of helping those touched by illnesses like my brother’s.”
by Mary Parker
