Immersive Advocacy for At-risk Children
Katie Jackson and her children find hope — and therapy — in living and breathing the HD mission. Katie is president of Help 4 HD International, which focuses on education, advocacy and service to HD patients in need.
A beautiful, vivacious forty-year old, Katie Jackson no longer recognizes the concept of a structured work week. Why have remnants of “normal” in a life that is anything but normal? Instead, she made the decision 16 years ago to jump into the HD world of unrelenting need with both feet, holding the hands of her three children as she went.
“24/7 advocacy is my therapy,” says Katie, whose husband Mike succumbed to HD in 2019, after 14 years of illness. “My three ‘babies’ are at risk for HD. It’s the only thing I can possibly do!” This advocacy is what has kept her going. “Without it I don’t know what I would have done. It is the action that prevents me from sitting around thinking and feeling helpless.”
Even as we spoke on Zoom, nine year old Macy was in the next room packing boxes of HD Awareness items for “HD families for HIVE (Highly Interactive Virtual Education Day). Fifteen-year-old Cooper and 18-year-old Madison are accustomed to the HD-related walks, dinners, movie night outs and education days. All three have also participated in clinical trials for children at risk for HD.
In the Blood
Advocacy and service have been in Katie’s blood since early childhood, when her brother’s cystic fibrosis diagnosis launched her family of six into a mission to raise money for a cure. “I started doing cystic fibrosis walks when I was very young,” she recounts. “Fundraising and advocacy was brought to our lives by my parents. They were really fighters, and taught us about not giving up, about coming together as a family to fight. It was always in us because we had to do it at such a young age.”
That fight has been a model of success for other rare diseases. Because of the advocacy, research and drug development that took cystic fibrosis across the finish line, Katie’s brother is alive today at 30. “We were told he wouldn’t live into his teenage years, we just hoped he would. There were really no therapies, there was nothing that was happening, I mean, there was lots of research, but there weren’t any good treatment options out there. Now there are!“ Just a week ago he swam a mile out to the buoy and back in Santa Cruz bay. I mean, he’s a stud!” Katie smiles.
Katie joined Help 4 HD in 2014, and became president two years later. One of her current enthusiasms is for the group’s program to educate law enforcement and first responder professionals about HD. Last month, Help 4 HD went to the National Sheriff’s Association and gave hundreds of sheriffs written educational packets and flash drives.
“Because of chorea and gait and speech problems, people with HD are so frequently targeted, being mistaken for people on drugs or alcohol. Many unnecessary altercations happen, and the way some people have been treated would bring anyone to tears,” she said. They exhibit at law enforcement conferences and teach them about HD, and to give communities what it takes for them to educate their local law enforcement themselves.
They also operate a huge relief program that helps HD families with quality-of0life essentials. After Hurricane Harvey, the group supplied these to victims in the U.S., and teamed up with Huntington’s Association in Puerto Rico. “We were so honored to work with the amazing Zoe Cruz, President of Huntington Fundacion Puerto Rico, to help so she could bring goods and funds to those on island during such a horrific time.” During Hurricane Irma, they helped evacuate people living with symptomatic HD from Florida. During the holidays, they send gift cards for families with financial devastation so they can have holiday meals, and they give parents the opportunity to buy a gift for their child.
When COVID-19 hit, Help 4 HD supplied funding for quality-of-life essentials and food around the country. “I work with (colleague) Katrina Hamel and others at Help 4 HD to supply funds to buy gas so people could get to doctors’ appointments, pay electric bills. We’ve also helped families whose houses burned down, and the list goes on. Thanks to our wonderful funders and supporters, we have been able to help hundreds
of families so far this year,” Katie says.
Katie admits the work is never-ending. “With this kind of work, it’s your whole life,” Katie reflects. “I was actually on the phone last night after someone in our network passed away and the family needed some help. I was on the phone a couple of nights ago with a little one that was in the ER. So all of us running the organization never really stop. This extends to our board members, who are amazing.”
When asked about fatigue, Katie says, “Of course I’m tired, I’m exhausted. My dream is that there would be a cure or therapy for Huntington’s, and I don’t have to do this anymore. I want to be out of a job 100%, and to know that my kids will be okay.” She jokes, “And then I can just talk about stuff like what’s happening on TV or something.”
Parenting At-Risk Children
In parenting her at-risk children, Katie has led with the philosophy that knowledge is power. Katie reflects, “My children have known they’re at risk for for a long time — forever, actually. People often ask, ‘When did you first have to talk to your child with HD?’ My answer is, I don’t really know. There was never a sit-down moment when we said, honey, you may have the HD gene. It’s always been a part of our conversation. So for my children, Huntington’s was really always a part of their lives.We have always have done HD walks, we’ve always done fundraisers, we’ve always done education days.”
“When my nine year old was born, my husband was fully symptomatic, and I remember putting her in his arms. He was moving with chorea,” she said. “I was terrified, but he never dropped her. I said she had a permanent rocking chair. And she really brought a lot of light back into him for the time he had left.”
“They are amazingly resilient. I think it’s due to the fact that they have never really had a ‘normal life.’ I have pictures of my little ones running around during the silent auctions. It’s just been something we have done for so long.”
Katie says one of the things she loves about being an advocate, being so involved, is she typically knows a lot that’s going on in the research. “So I’m able to keep my children hopeful,” she said. “They sometimes come and want to have a serious talk about it — and it’s usually around 10:00 at night, of course! I know it’s going to be a long night. But usually they’ll sit down and they’ll express some of their fears, and I listen, and then we talk about their fears.”
“We end up talking about research, and we talk about everything from regenerative medicine to ASOs to gene therapies. We talk about things that, back in their dad’s day, were not on the horizon yet. All that was available to him was tetrabenazene and actually that wasn’t fully approved until very close to when he was diagnosed. We’re a family that has been very heavily involved in research, from the second my husband was diagnosed.
“This is how I keep my family hopeful and going. I don’t want to pretend it isn’t there and go on with normal life, and then have things erupt and not be the best resource that I can be for them.”
Friends Inside and Outside the HD Community
Katie’s children have friends from HD families, but many who do not have ties with HD. During childhood, which is marked by self-involvement and fear of the unfamiliar, these young people have been the cream rising to the top. “Some were there when Mike was sick, and they weren’t deterred by their friend’s father’s ‘strange behaviors’,” Katie says. She recalls some bloody scenes of falls and ER runs. “I looked around at the funeral, and saw those special friends, and they are still their friends today, because they’re the ones who really didn’t have any judgment about was what was going on.”
One bonus for children of HD families is the fact that serious diseases are a crucible that can build character like little else can. Katie says one way this manifests in her own children is that they are very comfortable with people with disabilities. “My daughter has always helped in the special education classes. She understands that the public can be cruel or mean and that this can be because they are scared and helps others understand that. I’m very proud of my children, because from the beginning, if someone is ‘different,’ they don’t stare. They smile, and they say hello. So, though HD has brought a lot of fear, and a lot of a lot of horrible, horrible moments in our life, it also has built empathy in my children — something that a lot of children don’t have.”
Madison is 18 now. “She’s kind of at that point where she both wants and doesn’t want to be tested, but she’s thinking about it all the time. She has a lot of friends who have been diagnosed as gene positive, and others negative. She has social workers she can reach out to and a huge network of support that she’s known for so long. It’s easy for her to get support from different areas, because she’s been so involved since such a young age. Plus, we have a really great extended family, which is awesome, both my own and Mike’s. This includes Mike’s sister, a hospice nurse, who helped take care of Mike at the end of his life.
They also enjoy a network of HD professionals who supply support to the family on a clinical and emotional level. “This includes the neurologists, the incredible Dr. Vicki Wheelock, our amazing social worker Lisa Mooney, our supportive genetic counselor Mara Sifry-Platt, our national HD researcher friend Terry Tempkin, who may be retired, but I am lucky to have her number on my speed dial — they have all helped build this huge network we have.”
While Katie’s family has these advocates, she understands that a lot of people don’t. “Though family is irreplaceable, at Help 4 HD, we try to provide help for those who don’t have widespread supports,” she said. They have a support group that meets once a week and a caregiver support group meets once a week, but they also have an online portal where people can talk. “It’s our job to make sure we deliver an outpouring of love. If they need anything, night and day, we are there for them. Being a part of those groups shows them they’re not alone.”
The Finish Line
“I’m not naïve about research — it takes time, and I know that we can continue to fail trials, as we have all seen recently,” Katie said. “But I also know what research can do because I saw what it did for my brother. Unfortunately it didn’t make it in time for Mike. But I’ve seen the power of patient advocacy. For example, during the patient focus meeting in 2015 at the FDA I spoke in front of the panel.”
Katie recalls Mike speaking at the California Institute of Regenerative Medicine Meeting, addressing the officials and telling his story. He talked about how he would never walk his daughters down the aisle, how much he loved going to their soccer games and how he was going to miss that. At the end he told them he was dying, and he needed their help. Katie says she looked up and saw a couple of these strong, previously stone-faced officials crying. “Thanks to all the patient advocates that showed up that day and the brilliant work of Dr. Jan Nolta and her team at UC Davis, HD research was funded that day. That is the power of patient advocacy and us showing up and telling our stories,” she said.
“Often, the FDA regulatory agencies need to understand the impact of different symptoms and how it influences our lives, and the only people who can really articulate that is us,” she said. “This really showed me how powerful the patient voice is. If we’re ever going to get the cure into development and to market, it’s going to take all of
us together to get it done.”
“So my children have learned this,” she continues. “What we have to do is continue to have a very loud voice, to keep everything going, and I do believe that that one day we will have a therapy, because I’ve seen that happen with other diseases.”
Katie describes the terror that can seize her in imagining her children having to deal with what their dad went through. “Whatever the case, I will get through it, we will get through it together as a family. We’ll come together but, boy, we don’t want to.” We want
to get the research over the finish line.
Day to day, she knows the key to her children’s best mental health is remaining their rock. “One time when Mike was really getting sick, I broke down in front of my kids, all three of them. I saw the terror, the looks that said, ‘Mom can’t lose it, mom can’t lose it.’ And it showed me how they really lean on me for my strength. As a mom, when your children feel your fear they feel fear way more than even you do, so you just have to stay strong for them, and they will follow you.”
“Until there’s a therapy or cure for this disease I won’t stop, because I have three kids. I can’t protect my kids from HD, I can’t save them from HD, but the one thing that I promised them is that I will fight side by side with them. I have said to all three, ‘I can’t promise you that there’s going to be a cure for HD, or promise you that you won’t get Huntington’s. But what I can promise you is you’ll never do it alone. I will always be by your side.’ I will fight, and at the end of the day, if there isn’t something — and we don’t go there — but if there isn’t, they will never have to do any of it alone.”
She says in working with people with Huntington’s, the most common refrain is that they don’t want to be a burden to their family. “But everyone at Help 4 HD knows their families do not see them as burdens,” she says. “I think caregivers have you reach into a deeper love than you ever knew was possible. I think that we have to dig deep, and our relationships shift and they go through this whole journey. But at the end of the day, as long as your loved one is not alone, I think that’s all they need to know.”