Fostering the Next Generation of Global Bleeding Disorders Leaders

WFH’s Youth Group Twinning Pilot Project connects India’s bleeding disorders community with leaders in the US
Author: Leslie Pepper

Blowing up balloons and painting intricate cardboard masks are not typical activities at hemophilia seminars in India. But on a 100-degree day in July in Ahmedabad, in the western part of the country, that’s exactly what 40 young adult members of the bleeding disorders community were doing.

“It was something completely new,” says Mukesh Garodia, vice president of development at the Hemophilia Federation of India (HFI), which has 92 chapters spread out among four regions of the country. “We’ve never done anything even close to this, nor was it something we could have ever imagined doing.”

The Ahmedabad workshop was the kickoff to the World Federation of Hemophilia’s (WFH) Youth Group Twinning Pilot Project, which pairs a youth group of an emerging hemophilia organization with that of an established one to help improve and strengthen the youth group in the developing country. In addition to this two-day event in Ahmedabad, workshops took place in the southern (Calicut), eastern (Bhubaneswar) and northern (Rishikesh) regions of India.

HFI conferences are typically seminars where attendees sit in the audience and listen to speakers. “They’d never done these kinds of interactive workshops, and it was amazing that they truly gave us their trust,” says Dawn Rotellini, senior vice president of program development at the National Hemophilia Foundation (NHF), who attended the workshops in Ahmedabad and Calicut.

A New Kind of Twinning

The World Federation of Hemophilia has sponsored twinning programs for 20 years, but those programs pair treatment centers or patient groups. This is the first program that is focused on youth.

After completing a lengthy application process, NHF was paired with HFI, thrilling both organizations. “We wanted a place where we could send our youth safely,” Rotellini says. “And we already had a lovely relationship with the leadership in India.”

HFI was just as excited. “Living in a developing country with very limited access to treatment is very challenging,” Garodia says. “This Youth Twinning Program is an opportunity to bring youth development in India to a higher level. NHF being a strong twin partner, I believe we will learn a lot to strengthen our second line of leaders.”

The workshops in India were modeled after the content and structure of NHF’s National Youth Leadership Institute (NYLI), which provides leadership opportunities to American youth in the bleeding disorders community. The three-year program of the NYLI has been adapted and adjusted to meet the needs of this two-year program in India, where anyone ages 18 to 30 is considered a youth.

“Here in the US, our national youth initiative is structured differently. We have the NYLI program that is a three-year leadership program, while HFI has an extensive youth leadership network with youth representatives and leaders in each region of the country,” says Sherenne Simon, manager of education at NHF, who attended the workshops in Ahmedabad and Calicut. “Both programs focus on guiding youth to become leaders in their bleeding disorders communities. NYLI focuses on leadership for a variety of different career paths, while the HFI youth program uniquely guides its youth to eventually lead their chapters someday. It was a great opportunity for both groups to learn how each other approaches and executes advocacy, leadership and chapter work.”

While the workshop may seem like it was all fun and games, there was plenty of work to be accomplished. The ultimate idea was to give HFI participants a variety of exercises that they could take back and lead at their own chapters and continue to grow their youth programs.

Learning From Each Other

Carson Ouellette, a former NYLI member who founded the Bleeding Disorders Alliance of North Dakota and attended the Bhubaneswar and Rishikesh workshops, was astonished at the dedication some of the participants demonstrated. “One gentleman took three days each way on a train from his hometown to get to the regional center,” he marvels.

Each morning of the workshop, the participants opened with an icebreaker to get everyone geared up for the day ahead. For example, after the initial introductions, attendees broke into smaller groups and were tasked with putting 30 feet on the ground, without talking among themselves. In a group of 12 people, the challenge was to figure out how to do that creatively, by finding other “feet” such as chair and table legs.

Throughout both days, team-building exercises helped re-energize the group, and each day ended with another activity. One favorite exercise was balloon building. Groups broke into six teams, each of which got an equal number of balloons, one roll of masking tape and instructions to build the highest tower they could without leaning or touching the towers to anything. “It got pretty competitive, while all in good fun, of course,” Rotellini says.

“One group taped their balloon tower to the wall and another group yelled, ‘No! It has to stand by itself!’ One group even took balloons from other groups when they weren’t looking. It was really interesting to watch who stepped up to take a leadership role, and how everyone worked together,” Rotellini says. After each activity, they ran a debrief: What was the most fun part of this exercise? What was the biggest challenge you felt in this group? Will you be able to replicate this with young adults at your own chapter?

Joelle Smith, an NYLI member from Anchorage, Alaska, who attended the Ahmedabad and Calicut workshops, said her favorite activity was an art project where participants created two-sided masks. On the outside, attendees depicted how they think the world sees them. This could be their skills, their appearance or any other way they think others perceive them. On the inside, participants depicted how they see themselves—their hidden talents and their fears, for example. “In India, people don’t necessarily talk about their personal lives,” she says. “It was really interesting to watch them share things we never thought were a part of them.”

Harshal Kale, the youth chairman of HFI, said creating individual storyboards using sticky notes was particularly beneficial for the participants. Kale says it helped them to practice sharing their stories in a group and to become good listeners, be empathetic and draw strengths from everyone’s stories. “While facilitating, I could overhear some of the great stories of grit and perseverance, which helped practice establishing great connections, being vulnerable and being mindful of creating a safe space for everyone,” he says.

Sustained Impact

While the first day of activities focused on creating and telling individual stories, the second day concentrated on applying the new skills they’d learned to their chapters. How will they advocate for treatments in their country? How will they use their stories to make other people care about getting better access to healthcare, fundraising and volunteering? How can they use what they’ve learned to get others engaged?

While language was a hurdle (almost every state in India has its own native language, and knowledge of English varies from region to region), everyone learned something. “I wondered if all the participants would be able to understand,” says Kale. Fortunately, they were. Participants from all four workshops told him they’d never had such great learning experiences. “This was by far a great accomplishment for us,” he says.

NHF representatives will return to India for a national workshop with youth representatives from all four regions of the country to get an update on how the youth group members have implemented what they’ve learned with their own chapters, and to hear about any challenges that have arisen. “We’ll also give the next level of training to work through these challenges and figure out how they can prevent these from becoming issues in the future,” Rotellini says.

Rotellini hopes HFI will take it from there, though that’s not to say HFI will go it alone. “NHF has given them our long-term commitment to help with planning, document sharing and training materials,” she says.

The first four workshops in India were so successful that WFH asked NHF to deliver the same type of workshop for a group of 30 youth leaders in Egypt. “What’s so wonderful is we can replicate this and teach it anywhere,” says Rotellini. “We can morph these experiential workshops and change them slightly so they work for multiple groups.”

Garodia agrees. “This type of workshop would work in any country, as it’s not only educational, but also fun,” he says. “Programs like this will do wonders to help the younger generation enhance their skills and get more involved in the community.”

For Sherenne Simon, a key takeaway from the workshops was an appreciation for what India’s youth are achieving. “They are just doing such amazing work to advocate for people with bleeding disorders in their local chapters. They are leading and guiding large advocacy events and efforts and engaging other teams and youths. It’s truly amazing.”

Carson Ouellette agrees. “Meeting people from these chapters was kind of a wake-up call to me. Sure, we were there to teach what we could, but I learned so much about how committed people can be when they have work to do.”

Adds Rotellini: “We’re hoping that these young adults will take the things that they learned and be able to use them, not just with their chapter, but in all aspects of their lives.”