Carrying Jamal’s Legacy Forward Through Helping Hands
Every family living with neurofibromatosis has a moment when everything changes. For Valeria McConnell, that moment came into a doctor’s office in Maryland, and it set her on a path that continues today through the nonprofit she built in her son’s name, Jamal’s Helping Hands.
Who Was Jamal
McKinley “Jamal” Thomas was Valeria’s firstborn son “a bouncing baby boy, and then some,” she says with a laugh. The name Jamal came from her grandfather, McKinley, softened into something that felt right for her son while still honoring him.
Jamal was born in Mississippi, and the family later relocated to Maryland. He was officially diagnosed with NF1 at age 9, after his nurse practitioner noticed a fibroma on his skin and asked to biopsy it. “That’s when we were introduced to this big word: neurofibromatosis,” Valeria recalls. “We found out it was also known as Von Recklinghausen’s disease. And of course, the first thing you’re told is, don’t Google it. But out of curiosity, that’s the first thing we did.”
Finding care meant finding specialists who understood NF1 which meant the family’s world got bigger and more complicated overnight. Their physician referred them to the University of Maryland, who in turn referred them to Children’s National in Washington, D.C. “Our lives were changed,” Valeria says. “Our lives changed because we couldn’t simply go around the corner to get the care he needed,” Valeria explained. “It wasn’t anything we had budgeted for. But as a parent, you do what you need to make sure your child is taken care of.”
That experience helped Valeria understand how quickly a diagnosis can affect every part of a family’s life, from finances and employment to transportation, emotional well-being, and everyday responsibilities.
“Mom I Really Think You Can Do It !”
The organization’s origin story traces back to a waiting room at the University of Maryland. Valeria and Jamal were sitting there, watching other families come and go from appointments. When Jamal, just 9 years old, carrying his own new diagnosis, turned to his mother.
“Mom, we can help that family,” he said.
“Jamal, I’m taking care of you, I’m taking care of your stepfather, I take care of your brother and by the way, I work. I don’t think I can help anybody else,” Valeria told him.
“But Mom, I really think you can do it.”
“Mom, we can help that family,” he told her.
Valeria initially responded with all the practical reasons why taking on more seemed impossible. She was caring for Jamal, supporting her husband and younger son, and working full time. She even explained that she would likely need to return to school to learn how to help families effectively.
Jamal was undeterred.
“Mom, I really think you can do it,” he continued to tell her.
At just nine years old, Jamal was already looking beyond his own circumstances and identifying ways to support others. That same compassion continued throughout his life. He went on to earn a Bachelor of Science degree in Social Work and a Master of Social Work degree, pursuing a career dedicated to helping others.
Even after being diagnosed with a malignant peripheral nerve sheath tumor (MPNST), Jamal continued advocating for other people and encouraging his mother to do the same. He fought courageously until he ultimately lost his battle with MPNST on March 28, 2017.
In November 2017, Jamal’s Helping Hands was founded in his memory to carry forward the vision Jamal saw so clearly years earlier.
Removing Barriers and Restoring Hope
Jamal’s Helping Hands supports individuals and families affected by rare diseases and chronic illnesses. Valeria intentionally did not limit the organization’s services to people with NF1. Jamal’s Helping Hands runs on three connected pillars: care navigation and advocacy, caregiver education and support, and medical access and stability assistance.
“Jamal wanted to help everybody,” she explained. “I felt that putting the organization into a silo would not do him justice.”
The organization’s work centers on care navigation & advocacy, caregiver education & support, and medical access & stability assistance that increases access to treatment, reduces financial strain during care and fewer treatment interruptions. Together, these programs help families understand their options, identify resources, navigate complex systems, and advocate for themselves or their loved ones.
“Too often, families don’t know what they don’t know,” Valeria said. “Once they are educated and understand the barriers in front of them, they are better equipped to move forward.”
Financial assistance is another essential component of the organization’s work. Families affected by rare diseases may need to travel long distances for specialized treatment. Those trips can include airfare or mileage, lodging, parking, meals, and unpaid time away from work.
Jamal’s Helping Hands provides stipends to help families manage those expenses. When possible, families schedule several appointments during one trip, so they do not have to travel repeatedly.
For Valeria, supporting access to care also means looking beyond the appointment itself. A patient may have transportation to the hospital but no money for food. A parent may be sitting beside a child during an unexpected hospital stay while worrying about how the rest of the family will eat at home. Someone may arrive unprepared for admission without something as simple, but essential, as a phone charger.
“These are the things insurance doesn’t cover,” Valeria explained. “People often think insurance is all you need, but it is so much more than that.”
Supporting the Entire Family
Caregivers are often responsible for coordinating appointments, communicating with physicians, managing medications, addressing insurance concerns, making financial decisions, and advocating for their loved ones all while trying to maintain some sense of normalcy.
“There is no preparation for that,” Valeria said.
Jamal’s Helping Hands has hosted monthly caregiver sessions where participants can connect with people who understand their experiences. Sometimes, the most meaningful act of support begins with asking a caregiver how they are doing and genuinely listening to the answer.
The organization wants caregivers to have access to practical information, helpful resources, encouragement, and community.
“Supporting the caregiver is not separate from supporting the patient,” Valeria explained. “When we strengthen the caregiver, we strengthen the family’s ability to navigate the journey.”
Expanding Into the Gulf South
Jamal’s Helping Hands started in Alabama, moved with Valeria to Maryland during COVID, and returned to Alabama. That move back South sharpened her focus on a stark reality: the disparities in care access across Alabama, Mississippi, and Louisiana.
“There’s a limited number of institutions families can go to for the treatment they need, and the resources that are readily accessible in Maryland or D.C. , including transportation, you don’t necessarily see in the southern states,” she says. Jamal was born in Mississippi, and on what would have been his 41st birthday this year, Valeria notes that the state still doesn’t have a dedicated NF clinic. Louisiana still doesn’t have a nonprofit serving the neurofibromatosis community at all. A pharmaceutical partner has since approached her about helping fill that gap, and expanding across the Gulf South, Alabama, Mississippi, and Louisiana, is now a core part of where she’s taking the organization next.
Navigating Rare Together, This October
On October 3, Jamal’s Helping Hands will host the Navigating Rare Together: Walk and Family Festival at The University of Alabama in Huntsville from 9am – 1pm. The event is expected to bring together approximately 75 to 100 individuals from rare-disease and chronic-illness families, along with healthcare professionals, advocates, community organizations, and supporters.
The gathering will focus on connection, resources, and hope.
During the event, attendees will be invited to complete a brief survey about their diagnoses, where they receive care, the barriers preventing them from accessing treatment, and how Jamal’s Helping Hands can better support them. Valeria hopes the responses will provide a clearer picture of what families throughout the region need most.
Although the event will take place in Huntsville, its reach is already extending into neighboring states. Physicians from the University of Alabama at Birmingham are expected to participate, and families from Mississippi and other nearby communities plan to attend.
For Valeria, the festival is not simply a one-day gathering. It is an important step toward building stronger regional partnerships and creating a more connected support system for rare-disease families across the South.
Measuring Success Through Families Served
Over the next three to five years, Valeria hopes Jamal’s Helping Hands will become an organization families recognize as a place to turn when they do not know where to begin.
She envisions a stronger care-navigation infrastructure, expanded caregiver support, increased financial assistance, deeper healthcare and community partnerships, and a broader regional reach. She also hopes to develop a more complete understanding of the barriers facing rare-disease families throughout the Gulf South and use that information to advocate for meaningful change.
For Valeria, however, success will never be measured solely by the organization’s size.
“Success will be measured by how many families can say, ‘Because of Jamal’s Helping Hands, I was able to get the help I needed,’” she said. “That is the impact I want for Jamal’s legacy.”
Community members can support that mission by volunteering, donating, sharing resources, participating in events, connecting the organization with healthcare professionals, or helping establish new partnerships. Just as importantly, they can connect struggling families with available support and share their lived experiences to help the organization understand where gaps remain.
A Life That Continues to Matter
When people hear Jamal’s name, Valeria hopes they remember that his life mattered.
She wants him to be remembered not simply as someone who lived with NF1, but as someone who loved, served, persevered, and cared deeply about other people.
“When people hear Jamal’s Helping Hands, I want them to think about hope,” she said. “We may not always be able to change the circumstances someone is facing, but we can help make the journey less difficult.”
Valeria believes that if Jamal could see the organization today, he would lovingly remind her, “I told you that you could do it.”
Jamal was his mother’s greatest cheerleader. Today, she works to make him proud by carrying forward the vision he entrusted to her: removing barriers, restoring hope, and ensuring that no family has to navigate rare disease alone.
To learn more about Jamal’s Helping Hands and its work supporting families affected by rare and chronic illnesses, follow the organization on social media @jamalshelpinghands and if you live in Alabama, Mississippi, or Louisiana, consider attending the Navigating Rare Together: Walk and Family Festival on October 3 at The University of Alabama in Huntsville from 9am – 1pm, or volunteering your time to help bring care, connection, and hope to families across the Gulf South.