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Los Angeles Times
6 hours ago
- Los Angeles Times
A blind Bay Area woman conquered snowboarding and the Boston Marathon. Now she's taking on Kilimanjaro
A Bay Area woman with degenerative blindness is set to ascend Mount Kilimanjaro with her closest friends as guides in October. The strenuous feat is expected to be just the latest accomplishment for the never-say-quit Harvard graduate who has learned to snowboard and completed the Boston Marathon At age 9, Kristie Colton was diagnosed with Stargardt disease — a genetic condition that affects the central portion of the retina and leads to gradual vision loss. School teachers noticed that she was resigned and unresponsive in class as she concealed her vision symptoms as best she could. What began as a subsequent visit to the eye doctor for a pair of glasses ended up becoming a life-altering diagnosis. 'I put a lot of mental energy into trying to hide it, but it did become harder and harder to hide,' said Colton, now a 28-year-old Mountain View resident. 'The hard part about degenerative eye disease is you don't wake up one day and realize 'Oh, I should use my cane now for the rest of my life.'' Colton, however, was attracted to athletics from a young age. She joined the National Ability Center in Utah, which specialized in adaptive sports, so that she could learn to snowboard with accommodations. She would later attend Harvard, where she met Jungyeon Park and Grace Eysenbach, who both participated in the Boston athletic scene. Colton and Park were running partners, and the former trained the latter as a guide for longer routes, with Park acting as a responsive set of eyes. The pair ran the Boston Marathon last year. 'Kristie was the first person that I had met who was blind,' Park said. 'She spent like two weeks teaching me how to snowboard, and I became proficient enough to become a guide… We started guiding each other, and then running.' Colton and Park would later help to establish the Vorden Initiative, a nonprofit organization that seeks to educate sighted individuals to assist those who are blind, including teaching them to become an athletic guide and offering educational resources to bolster partnerships between blind and sighted people. 'Resources are rather limited on the internet,' Park said. 'There's a lot of nonprofits and resources for blind people to do things a certain way or to learn new things, but there really isn't a resource for sighted people to become allies.' At an adaptive sports session early this year, the group made contact with Walt Raineri, a former paralympian in sailing with retitnitus pigmentosa — a hereditary disease that attacks the retinas. A few months later, Raineri invited Colton — and her two friends as guides — to a treacherous weeklong hike up Mount Kilimanjaro. 'My immediate gut reaction was, 'No,'' Colton said. 'He was just telling us more about the trip, and he gave all these details, and it kind of dawned on us that this is going to be a really once-in-a-lifetime opportunity.' Eleven blind climbers, each accompanied by one sighted individual — aside from Colton, who has two guides in Park and Eysenbach — will hike to the near-20,000-feet peak of Mount Kilimanjaro, in Tanzania on Raineri's exhibition. Before the pandemic, around 30,000 people attempted the hike each year with a 66% success rate, including several visually impaired climbers. To prepare for the climb, Colton and her guides have focused on heavy cardio training. They recently began their first practice hikes. 'I'm still working out how to use my hiking poles to sort of feel the ground, and I think guiding looks really different going uphill versus downhill for me with all the different lighting conditions on the trail,' Colton said. 'Grace and I have been working out the kinks there… I'll be going pretty much every weekend.' The trip will not only be personally significant, but will also be an opportunity to educate on the condition of blindness, both Park and Eysenbach said. 'One of the things that I have really enjoyed about being a part of guiding Kristie is meeting people who have a spectrum of visual impairments, and encouraging other people to realize that it is such a wide spectrum, and how it affects people is very different,' Eysenbach said. The group will begin their trip in late September and begin their ascent on Oct. 1, Park said. Colton said she could not have imagined such a possibility when she sat in school, feigning that she had no answers to teachers' questions simply because she could not see the board. 'When I was younger, I really didn't know what my disease was going to lead to in my life… I didn't know what my life was going to amount to,' Colton said. 'I am a 28 -year-old woman who lost her eyesight and yet I get to live independently with some of my best friends… Now these best friends get to go on all kinds of adventures with me, from backpacking the Grand Canyon to running the Boston Marathon, and now Kilimanjaro.'
Boston Globe
14 hours ago
- Boston Globe
Tips for navigating senior care in Mass.
1. Aging at home Most seniors want to remain in their homes as long as possible, said Michelle Woodbrey, cofounder of 2Sisters Senior Living Advisors, which helps families select care options. Village networks like Adult Foster Care services are for people who would like to continue living in their homes with support and can be connected through the Advertisement Then there's private in-home care, which often comes with a steep price. 'Private pay home care averages about $40 an hour in this area, with minimum shifts of three or four hours,' Woodbrey said. 'It adds up quickly, and not everyone qualifies for affordable alternatives.' Advertisement State-funded options such as the There are 24 ASAPs across Massachusetts, contracted by the Executive Office of Aging & Independence, that offer services for adults 60+ and their caregivers — from care planning and food assistance to help with housing, health, and transportation. 'People can get by with scheduled care for a while,' said Woodbrey. 'But once their needs increase, home might no longer be an option, especially if they can't pay for round-the-clock support.' Dr. Bill Thomas, a Harvard-trained geriatrician, suggested some nontraditional paths that are growing in popularity, like senior home sharing, where an older adult with extra space in their home provides housing to a compatible individual in exchange for discounted rent, companionship, or help with household tasks. In Massachusetts, Advertisement 'It's a great idea, underutilized, radically inexpensive and can do so much to improve and extend the independence of older people in their own homes,' he said. Dr. Rachel Broudy, faculty at Ariadne Labs, which is affiliated with Brigham and Women's Hospital and Harvard T.H. Chan School of Public Health, advised that home sharing can be complicated and to 'consider it with caution.' She recommends the Program of All-inclusive Care for the Elderly, known as 2. Assisted living and memory care. Assisted living is best for those who need help with daily tasks but not full medical care. Assisted living homes' median monthly rents range from $3,655 to $8,036, according to the Massachusetts' Two affordable and innovative models experts recommended are And Advertisement 3. Rest homes A more affordable and less intensive option than nursing homes, rest homes are in limited supply across Massachusetts. 'Many of them can accept MassHealth and are more affordable when paying private,' said Woodbrey. 'There is less space and privacy, but they are usually better than a nursing home if someone doesn't yet need that skilled nursing level of care.' There are 76 rest homes licensed by the Massachusetts Department of Public Health. These provide room and board, medication management, and some medical oversight in a community setting. Costs average around $100 per day, and residents may qualify for MassHealth, Supplemental Security Income, or Emergency Aid to the Elderly, Disabled, and Children to help cover expenses. 4. Skilled nursing facilities and nursing homes Many seniors are terrified of nursing homes, equating them with a total loss of independence. The good news is that experts only recommend them in rare and specific cases, and many in Massachusetts are rethinking the nursing home model of care. Broudy said the best nursing homes rely on peer support and shared responsibilities, where longtime staff take on flexible roles and the environment feels more like a home among friends. Advertisement The Green House Model, co-developed by Thomas, the Harvard-trained geriatrician, emphasizes small, home-like settings for about 10-12 seniors. Several facilities in Massachusetts, such as Continuum Care Retirement Communities have a range of independent, assisted living, skilled nursing, and memory care to allow residents to transition through levels of care without relocating. CCRCs require an entrance fee as well as monthly payments. The entrance fee is almost entirely refundable when a person moves or dies. Some must undergo a financial review to be able to afford long-term care. Experts highlighted in Dedham shares a 162-acre campus with the Rashi School, where residents mentor students from kindergarten through eighth grade. 5. Additional resources For more guidance, families can review the state's aging resources at for a fee, or the state's Serving the Health Insurance Needs of Everyone ( Sarah Rahal can be reached at
Politico
15 hours ago
- Politico
Trump's chief intervened to save RFK Jr.'s top vaccine aide
According to the officials, Makary and Kennedy persuaded the White House to review statements by Prasad that Loomer said showed disloyalty, arguing they were taken out of context. 'I think it really is something good about the president that he's willing to change his mind when persuaded,' one of the senior administration officials said. But the victory could prove pyrrhic if Prasad's ability to set policy is diminished. Before his firing, Makary had named him not only the head of the FDA's Center for Biologics Evaluation and Research, which oversees regulation of vaccines and gene therapies like Elevidys, but also the agency's chief medical and scientific officer. Makary, like Prasad, was a leading critic of the Biden administration's response to the Covid pandemic. Prasad, a University of Chicago-trained hematologist and oncologist, was previously a professor of epidemiology and biostatistics at the University of California, San Francisco. Sen. Ron Johnson (R-Wis.), the author of a 2018 law Trump signed that permits patients greater access to experimental therapies, told POLITICO he texted Trump days ahead of Prasad's ouster to raise concerns of the Duchenne muscular dystrophy patient community about the FDA's efforts to restrict Elevidys. The company initially refused to comply with the agency's July 18 request that it halt shipment. It agreed on July 21 to stop shipping the medicine by the end of business the next day to maintain a 'productive and positive working relationship with FDA.' The agency then allowed the company to resume distribution to ambulatory patients on July 28, a day before Prasad's ouster. Those patients are a subset of people with the condition, which weakens muscles and leads to the loss of the ability to walk, typically by age 12 . Most die before they reach 30 . Johnson's Right to Try Act, which Trump repeatedly touted on the campaign trail as a signature achievement of his first term, aims to allow patients with life-threatening diseases to try experimental medicines without FDA involvement. The agency has a separate longstanding program known as compassionate use that allows such patients to access experimental treatments when other options do not exist. 'I have never met or spoken to Dr. Prasad,' Johnson said when asked about Prasad's return. 'I hope all the new appointees within HHS and its subsidiary agencies restore integrity to scientific research, fully respect both the letter and spirit of the Right to Try Act, and carefully listen to and empathize with the patients who are impacted by their decisions.' Former FDA officials said they expect the power struggle between Republicans who support pharma and Kennedy to continue. Loomer, meanwhile, says she now wants Trump to dismiss Stefanie Spear, Kennedy's principal deputy chief of staff and senior counselor, and Casey Means, Trump's nominee to be surgeon general. Casey Means is a close Kennedy ally and sister of Kennedy adviser Calley Means. 'I think she wants to split the MAHA and MAGA coalition,' one of the senior officials said of Loomer. 'She wants to split them in two.' Tim Röhn is a member of the Axel Springer Global Network.
