Image provided by: University of Oregon Libraries; Eugene, OR
About Appeal tribune. (Silverton, Or.) 1999-current | View Entire Issue (March 13, 2019)
SILVERTONAPPEAL.COM ܂ WEDNESDAY, MARCH 13, 2019 ܂ 3A Salem family raises $900K to battle rare Batten disease Capi Lynn Salem Statesman Journal USA TODAY NETWORK Haley Pollman loves animals, Barbies, princess dresses and unicorns, not nec essarily in that order. Visit her South Salem home and you’re likely to meet the furry fourlegged members of the family before parents or siblings. Haley does the introductions on the porch, stroking each animal to make sure she’s naming the right one, Fred and Gin ger the pygmy goats, and Gary and Lucy the dogs. She’s lost her sight, a symptom of a rare and deadly genetic disorder called Batten disease, but it doesn’t stop the 9 yearold from riding her pink jeep in the yard or her purple moped on the drive way. It doesn’t stop her from exploring the rest of the property, which she’s proud to say has a secret garden and a se cret playhouse. And it sure doesn’t stop her from snow skiing down a mountain or water skiing on a lake. “Haley is one of the bravest people I’ve ever met,” her dad Dean says. Mom Melissa and older siblings Au drey, Maddie and Cole agree. “She’s active, she’s happy, and she’s social,” Melissa says. “We try to take our lead from that.” Batten disease affects the brain and nervous system. Symptoms sometimes begin in infancy, sometimes later in childhood, and it’s almost always fatal. But there is hope. The Pollmans have connected with a lab in South Dakota where some of the best scientists in the field are doing promising research on gene therapy, and they’re raising money for an FDAapproved clinical trial. “We feel they’re on the brink of finding a cure for this thing,” Dean says. “We’re trying to do the best we can to make a dif ference. We just know we have to do it quickly.” They launched Haley’s Heroes Foun dation early last year and raised more than $900,000. Their goal this year is to raise at least that much. Foundation mer chandise, including Tshirts, sweat shirts, hats, even bottles of wine, are em blazoned with unicorns, a symbol of strength, hope and healing power and one of Haley’s favorite things. Her world remains a happy place filled with glitter, magic and all things purple and pink. Symptoms start with vision loss Between the first and second grade, Haley began experiencing vision prob lems. She started pulling things close to her face and struggled to read. She was prescribed glasses, but her eyesight continued to deteriorate. Her parents spent the better part of a year taking her to various specialists. They eventually were referred to Oregon Health & Science University, where the results of a genetic test forever changed their world. “These children are 100 percent healthy — until they’re not,” Melissa says. Haley was diagnosed with Batten disease in October 2017. The prognosis included three words no parent ever wants to hear: Rare. Fatal. Incurable. There are 13 forms of the neurodegen erative disease — also known as ceroid lipofuscinosis, neuronal (CLN) — and each is given a different number designa tion. Haley has CLN1. Her parents have been told there are about 1,000 docu mented cases worldwide, although some believe that would be on the high side. Experts estimate all forms of Batten dis ease affect around 1 in 100,000 births worldwide. The disease varies in each child, al though there is overlap no matter what form. Early symptoms usually appear be tween the ages of 5 and 10 years old and children affected generally are rendered blind, immobile and cognitively im paired. Children with Batten disease of ten die by their late teens. Dean and Me lissa didn’t procrastinate or hold back de livering the news to Haley’s siblings. The last thing they wanted was for them to Google the disease before hearing about it from them first. Batten disease is as dif ficult to diagnose as it is to explain. It’s a family of rare disorders caused by genetic mutations that affect cells in the brain and lead to devastating and irreversible effects. Lysosomes in the cells don’t function properly, failing to break down proteins and dispose of other waste. Melissa Pollman describes it this way: If the garbage collector stopped taking away the garbage, everything might be OK for a while but eventually, the garbage would overflow and rot everything around it. Haley doesn’t have a garbage collector. Mom on a mission to save her child Melissa is gathering as much informa tion as she can about Batten disease. She recently attended a scientific symposium on lysosomal disease re search in Orlando, Florida. Batten is a ly sosomal storage disease. She and Dean quickly learned how important connec tions are when it comes to fighting for treatment for a child with a rare disease. She stepped away from the family construction business last year to be come a fulltime patient advocate and Melissa, Haley, Dean, Cole, Maddie, Audrey and their dogs Gary and Lucy at their home in Salem on Saturday, Feb. 23, 2019. MICHAELA ROMÁN / STATESMAN JOURNAL fundraiser. She’s focusing on raising money and meeting with researchers, pharmaceutical companies, and other family foundations. They’re connecting with other fam ilies through the Batten Disease Support and Research Association, which funds and facilitates scientific research throughout the drug development proc ess. Melissa and Dean attended a confer ence last summer. They’ve been to the Batten Disease Center of Excellence at the University of Rochester Medical Center in New York, most recently in December after the fam ily went on a MakeAWish trip for Haley to Disney World. The center provides support and clin ical services and works to find treat ments that will slow or stop the progres sion of the disease. “With the right doctors, there’s a lot of research out there,” Melissa says. “There’s a lot of hope.” They know of two foundations that have successfully funded gene therapy clinical trials for children with other forms of Batten disease. “If anybody’s going to pay attention to it, someone’s got to start the research, and who better than the families?” Melis sa says. “You’re not going to get more passion than from a parent trying to save their child.” Small world, even in rare diseases Kristyn Lara can relate. Her son An drew, 7, also has Batten disease. Andrew is a happy, caring boy who loves cars, trucks and construction vehi cles, basically anything that goes. He was diagnosed in January 2016, has CLN3, and lives just a couple miles away from Haley. Their moms discovered they were practically neighbors after meeting on line in an online support group for Batten parents. “It would be really nice to meet in per son,” Kristyn said. “We’re both going through the same journey.” The online support group is a blessing for Kristyn because husband Rick works out of state. “It’s just nice for people to understand what we’re facing and when you have one of those days where you’re frustrated, they’re there to help you through it,” she said. The disease has progressed rapidly in Andrew, who attends Battle Creek Ele mentary School. He’s lost his sight, too, uses a wheelchair much of the time, and recently had surgery because of difficulty swallowing and eating. A feeding tube now delivers nutrition directly to his stomach. The Laras don’t have a foundation, but they’re fighting just the same to save their son. Hearing what the Pollmans are accomplishing gives them hope, too. Gene therapy studies on mice Jill Weimer is one of the experts on Batten disease. She’s the senior director of therapeutic development at Sanford Research in Sioux Falls, South Dakota. Her lab receives funding from Haley’s Heroes Foundation and is working on projects for six different variances, in cluding the one Haley has. “The biggest hope right now is gene therapy,” Weimer says. “You take the common cold virus, strip out the bad parts, and trick the virus into carrying a healthy copy of CLN1 into cells.” Her lab is testing how safe and effec tive gene therapy is on mice with CLN1. Developing a therapy or drug can in volve years of experiments on animals and human cells before it ever gets to the clinical trial stage. How soon could a clinical trial be pos sible for Haley’s form of Batten disease? “I would hope and pray 6 months to a year,” Weimer says. “But a lot of things are out of my control. “The families don’t have the luxury of time. One of the things our lab has really focused on the last three years is coming up with ways to do the science faster.” Batten researchers compete for re search dollars against counterparts working with diabetes, cancer and other widespread illnesses, and it’s often a number’s game. That’s why private foundations rais ing money for rare diseases are so critical. Weimer confirms funding from two foundations brought gene therapy to clinical trial for their child’s form of Bat ten disease. “That’s inspiration for the Pollmans,” she says. “Like those families, they didn’t take no for an answer. They are knocking on every door looking for hope for their daughter.” Weimer stays in regular contact with families who help fund her research, in cluding the Pollmans. “Just know how important the fam ilies and the foundations are in this jour ney,” she tells the Statesman Journal. “I learn a lot from them about the disease and the patients.” She has yet to meet Haley, although she’s working with the girl’s pediatrician at Kaiser Permanente to procure a sam ple of her cells. “We take a tiny punch of her skin about the size of the tip of a pin, bust apart those cells, called fibroblast cells, grow them in a dish and keep them forev er in my lab for drug screening,” Weimer says. “We can see how drugs affect the cells.” Community support beyond Salem Haley attends Montessori Discovery Center and Lee Elementary School. A fundraiser at Lee recently raised $1,700, and students celebrated Feb. 28 by dressing up as zebras or unicorns — zebras to represent for Rare Disease, uni corns for Haley’s Heroes Foundation. Haley uses a cane at school, although she prefers not to. She doesn’t like the word blind, either. She just sees differ ently than everybody else. While at Disney World, her siblings helped her visual the rides by describing what they saw. Her favorites were Soarin’ Around the World and Avatar Flight of Passage, both flight simulators that tap into senses other than just sight. Haley gets frustrated she can no long er read, and it was upsetting not being able to see fireworks last summer. “She’s a typical 9yearold,” her mom says. “She doesn’t want to be different.” She doesn’t see herself as different, ei ther. When Salem Academy did a coin drive to benefit the foundation, the school invited Haley to an assembly and after being introduced, corrected the principal. “I’m not sick,” Haley said. “I just have Batten disease.” While in Florida on the MakeAWish trip, she asked her mom and dad if people die from Batten disease. “That was hard,” Melissa says. “She looked at me and said, ‘I don’t want to die.’ I told her, ‘Dad and I are doing every thing we can to fight’ “Fifteen minutes later — kids are so re silient — she’s like, ‘I have a perfect life’ while Dean and I are a ball of mush trying to pick ourselves up.” The goal for Haley’s Heroes Founda tion is to raise $1 million this year and meet with a handful of key foundations across the country that have been at this much longer. The hope is to pool their resources and share expenses, such as lab overhead. “Ultimately, we all have the same goal, to bring awareness and find a cure,” Me lissa says. Promising research is underway, but sadly it’s not happening fast enough for many Batten families. “We’re really trying to push the sci ence forward,” Melissa says. “There are researchers out there who want to do this, but it’s all about the money.” How to help Visit haleysheroesfoundation.org to donate or learn more about the founda tion and upcoming fundraisers including “Hops for Hope” on May 18 at b2 Ta phouse & Brewery and the “Bid to Rid Batten Auction” on Sept. 14 at Salem Con vention Center. “Forward This” taps into the heart of the Mid-Valley — its people, history, and issues. Contact Capi Lynn at clynn@StatesmanJournal.com or 503- 399-6710, or follow her the rest of the week on Twitter @CapiLynn and Facebook @CapiLynnSJ. www.edwardjones.com Member SIPC LOCAL ADVISORS Salem Area Vin Searles FINANCIAL ADVISOR Mission | 503-363-0445 Michael Wooters FINANCIAL ADVISOR South | 503-362-5439 Garry Falor CFP ® Cameron Hunt CFA, CFP ® FINANCIAL ADVISOR FINANCIAL ADVISOR West | 503-588-5426 West | 503-588-5426 Chip Hutchings FINANCIAL ADVISOR Lancaster | 503-585-4689 FINANCIAL ADVISOR West | 503-585-1464 Jeff Davis FINANCIAL ADVISOR Liberty | 503-581-8580 FINANCIAL ADVISOR Mission | 503-363-0445 Erin Garcia Tim Sparks Caitlin Davis CFP ® Matthew Guyette FINANCIAL ADVISOR FINANCIAL ADVISOR Liberty | 503-362-0011 Commercial | 503-370-6159 Tyson Wooters Phil Ridling FINANCIAL ADVISOR FINANCIAL ADVISOR Liberty | 503-581-8580 South | 503-362-5439 Keizer Area Sheryl Resner Mario Montiel Kylee Williams Charisa Henckel FINANCIAL ADVISOR Keizer | 503-304-8641 FINANCIAL ADVISOR Keizer | 503-393-8166 FINANCIAL ADVISOR Keizer | 503-304-8641 FINANCIAL ADVISOR Keizer | Station 503-393-4677 Surrounding Area Bridgette Justis Tim Yount Kelly Denney David Eder FINANCIAL ADVISOR Sublimity | 503-769-3180 FINANCIAL ADVISOR Silverton | 503-873-2454 FINANCIAL ADVISOR Dallas | 503-623-2146 FINANCIAL ADVISOR Stayton | 503-769-4902 Compare Our CD Rates Bank-issued, FDIC-insured 3-month 2.30 % APY* Minimum deposit $1,000 1-year 2.50 % APY* Minimum deposit $1,000 3-year 2.75 % APY* Minimum deposit $1,000 * Annual Percentage Yield (APY) effective 03/05/2019. CDs offered by Edward Jones are bank-issued and FDIC-insured up to $250,000 (principal and interest accrued but not yet paid) per depositor, per insured depository institution, for each account ownership category. Please visit www.fdic.gov or contact your fi nancial advisor for additional information. Subject to availability and price change. CD values are subject to interest rate risk such that when interest rates rise, the prices of CDs can decrease. If CDs are sold prior to maturity, the investor can lose principal value. FDIC insurance does not cover losses in market value. Early withdrawal may not be permitted. Yields quoted are net of all commissions. CDs require the distribution of interest and do not allow interest to compound. CDs offered through Edward Jones are issued by banks and thrifts nationwide. All CDs sold by Edward Jones are registered with the Depository Trust Corp. (DTC). OR-SAL0009194-02^_0
