National Minority Health Month Spotlight On…Abrar Tanveer, AFTD Volunteer

National Minority Health Month Spotlight On...Abrar Tanveer

April is National Minority Health Month, a time to raise awareness about health disparities that continue to affect people from racial and ethnic minority groups, and to encourage action – both to reduce those disparities and to improve the health of racial and ethnic minority and American Indian/Alaska Native communities.

 Throughout the month, AFTD is spotlighting stories from families of color who are impacted by FTD and those who are building towards a future free of FTD. In the final installment of the National Minority Health Month Spotlight Series, we’re featuring Abrar Tanveer, an AFTD volunteer who has helped to increase FTD awareness and raise funds in support of AFTD’s mission by running in marathons in honor of his father, who lived with primary progressive aphasia.

When Shakeel Tanveer died in 2019 after living with primary progressive aphasia (PPA), his eldest son, Abrar Tanveer, worked through his grief by doing something he’d never done before: running a marathon and fundraising in support of other families facing an FTD diagnosis.

 “When I was younger, I asked my dad why he never ran a marathon. In his response, he laughed, looked at me and said ‘I have bad knees and I’m old. When you get older though Abrar you can run one for me.’ That’s why I’ve decided to run the Flying Pig Marathon in our hometown of Cincinnati,” wrote Abrar Tanveer on his AFTD fundraising page in 2020. “This [was] the perfect opportunity for me to not only fulfill my promise to him, but to raise money with the hope that one day we can find a cure for this disease.”

In the summer of 2016, when Tanveer was 21, he received a call from his family that forever changed his life. Tanveer learned that what he had thought was a speech impediment his father suddenly developed was instead PPA, a diagnosis he was completely unaware of.

“He was the life and light in every room he walked in and an incredibly social individual. When my dad would visit me in college…he wasn’t as confident with his words or his social interactions as much as he used to be,” Tanveer told AFTD. “He was a very active individual and was always confident in himself, regardless of any situation you put him in. We really noticed a difference once his confidence started to fade away. It was that shift in personality and him not being able to form sentences in the way that he used to that was a real indicator that something might be a little different here.”

Within a year of being diagnosed with PPA at age 54, Shakeel’s word-finding and sentence-forming abilities rapidly declined. Tanveer recalled having difficulty handling the news of his father’s diagnosis. “I didn’t know how to talk about it with my friends, so it was very difficult to converse or even know what to do,” he shared.

In time, Shakeel’s diagnosis affected his ability to walk and independently care for himself. Tanveer’s family and friends stepped in to care for Shakeel before he ultimately entered hospice care in 2019. Nearly three weeks after moving into hospice and three years since being diagnosed with PPA, Shakeel died on December 26, 2019 at the age of 58.

“One thing we’re thankful for is that my dad passed away in hospice surrounded by his family. It was peaceful in that manner,” Tanveer said. “I had a lot of open conversations with my mom and my siblings — that was our way of trying to reconcile what we had just experienced. It was a way to come together and support each other.”

Following his father’s death, Tanveer looked for a way to honor his father’s life while also helping others along the FTD journey. He decided to run in the Flying Pig Marathon in 2020 and fundraise for AFTD. Tanveer was able to raise more than $10,000 in support of AFTD’s mission, surpassing his initial goal by 400 percent.

“Grief is a journey and it’s different for everyone. For me, I immediately went to work on the marathon and the fundraiser. It was my way of trying to cope with it. Initially it was working, and I felt very empowered,” said Tanveer.

Since then, Tanveer has been a dedicated AFTD volunteer raising awareness and funds in support of the organization’s mission. He shared his father’s story during the With Love campaign in February and was a panelist for “The Diverse FTD Care Partner Experience,” a session at AFTD’s 2022 Education Conference. Tanveer is gearing up to spread more FTD awareness and fundraise in support of AFTD’s mission at the upcoming 2022 Flying Pig Marathon in May.

Along with fundraising, Tanveer is using his awareness efforts to keep his father’s legacy alive. In addition to being a devoted family man, Shakeel was dedicated to his community. He was the driving force behind establishing the Islamic Center of Greater Cincinnati, which has been operational since 1995. Tanveer shared that his father helped to find the land for the building, raised money, and helped to build the center. When he died, nearly 1,000 people from their Islamic Center community attended his funeral.

“I recognized that my family was blessed to have that community support we had. For those underrepresented voices within the FTD community, I recommend continuing to advocate for yourselves. Your journey is unique, and don’t be afraid to vocalize what you need,” Tanveer said.

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