Latest news with #ShrinersChildren
Yahoo
3 days ago
- General
- Yahoo
Shriners Children's Erie celebrates 98th annual 'Shriners Day'
Shriners Children's Erie is a local nonprofit that seeks to help children in our community with pediatric orthopedic conditions. On Sunday, the nonprofit celebrated 98 years of providing that care, inviting the community to their annual 'Shriners Day.' 'It's great. I've been a Shriner now for 13 years. My dad was a Shriner for over 50 years, and it's just a blessing. You come here and you see what we do with our philanthropy, with the children, they're some of the happiest kids in the world that you see here,' said Michael Kerns, board chairman of Shriners Children's Erie. Shriners from across the country and even Canada came to celebrate another year of service, and those in attendance were invited to check out a car show, listen to the shrine brass band, or take a tour of the building's medical center. Jersey Mike's presents Shriners Erie with annual donation But Shriners Day is just a glimpse into what Shriners Children's Erie does for our community, and it's stories like Winter Wozniak's that matter most.'I came here because I'm the patient ambassador, and I want to talk to everyone about what I do, because I really think it's fun,' said Wozniak, patient ambassador with Shriners Children's Erie. Wozniak became a Shriners kid when she was just eight years old after a blood infection progressed into a complex medical condition. Although nervous at first, she said Shriners has helped her regain her arm strength through the years, and she said she's a big fan of all the games she gets to play in occupational and physical therapy. 'They helped me motion my thumb because before I couldn't even make a thumbs up with my left thumb, and now I can move my fingers on my right hand more than I used to be able to,' said Wozniak. Shriners Children's Erie receives over $64K thanks to Spirit of Children program She said she got to play one her favorite games at the celebration, challenging a friend in some pickleball in the occupational therapy room. If you would like to donate or learn more about Shriners Children's Erie, you can check out their website here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Health Line
11-05-2025
- Health
- Health Line
Mom, Daughter Diagnosed With NF1-PN: What to Know About the Rare Disease
A mother and daughter share the same rare genetic disease that causes tumor growth throughout the body. After living with neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) for four years, daughter Samatha Pearson was accepted into a clinical trial that changed her life. The mother-daughter duo shares their journey of managing the condition and advocating for others living with the rare disorder. In July 2015, Samantha Pearson was at summer camp playing a running game in the gym when her knee buckled, and she collapsed. 'The pain started immediately,' she told Healthline. When she told her parents about the pain, they decided to wait and see if it would subside on its own. However, after a few days of constant pain, they took her to the doctor. 'After doing an X-ray of my knee cap, he showed mom the tumor in my femur and knee, and he said to go see an orthopedic surgeon,' said Samantha. A couple of days later, at the orthopedic surgeon's office, an X-ray of Samantha's waist down revealed 27 tumors. The doctor informed Samantha and her mom, Michelle, that she most likely had neurofibromatosis type 1 (NF1) with plexiform neurofibromas (PN), a chronic disease in which tumors grow along nerves and can cause severe pain, mobility issues, and disfigurement. 'He handed me a note with the condition written on it and told me to call Shriners Children in Salt Lake City because there was no one in Las Vegas who could treat her. I was terrified,' Michelle told Healthline. A rare genetic disease After waiting for several months, Samantha was able to get an appointment at Shriners Children's Hospital in October 2015. 'The doctor took one look at Samantha and said, 'You have neurofibromas' and he looked at me and said, 'She got it from you,'' said Michelle. While NF1 is a genetic condition, as many as half of those diagnosed with NF1 might not have a family member with the condition, said Phioanh Leia Nghiemphu, MD, professor of clinical neurology at the University of California, Los Angeles, and clinical director of the UCLA Neurofibromatosis Program. 'Within one family, the manifestations of NF1 can also be different, so even if a family has many members with NF1, not all of them will have NF1-PN,' she told Healthline. Like the Pearsons, people with NF1 might have PN developed since birth, but the PN might not be diagnosed until their late adolescence or adult age, Nghiemphu added. Based on visual characteristics of the condition, including neurofibromas and freckling, the doctor determined that both Samantha and her mother have the same condition. Michelle had experienced partial deafness in her left ear for about a decade, which she learned was due to a tumor near her ear. 'It was a shock. I had never heard the word neurofibromas before,' said Michelle. 'I had no idea I had this. When the doctor told us about the visual characteristics, I asked my parents if it runs in the family and I checked out my two boys to see they had any symptoms.' Her sons showed no signs and her parents knew of no one else in the family with the condition. Michelle was relieved that her sons didn't have the condition and that she didn't experience debilitation or pain from it. However, it was difficult to witness Samantha's suffering, she said. 'Because [the tumors] grow on nerves and can grow very large, they can cause disfiguration, pain, difficulty using various body organs because of compression, or numbness and paralysis,' said Nghiemphu. Removing tumors by surgery can be painful, too, yet if they are not removed, they have a rare risk of developing into cancer called malignant peripheral nerve sheath tumor (MPNST), which is rare. But in most cases, NF1 is not a deadly disease. Most people with the condition have an average life expectancy. A life-changing clinical trial Because Shriners does not provide emergent care, Samantha was referred to Primary Children's Hospital in Salt Lake City to have the tumor in her left femur removed. However, the doctor who was recommended to Michelle through a parents' support group had a three-year waiting list. 'I didn't care that he had a three-year waiting list. I wasn't going to leave until Samantha saw him,' said Michelle. 'I was unruly, outspoken, and unconventional cause I'll do anything for my kid. I had no interest in keeping quiet. My daughter was not well.' Her advocacy resulted in Samantha receiving care from the doctor, who suggested that Samantha participate in a clinical trial. After not qualifying for several trials, in 2019, she finally qualified for the Phase 2b ReNeu trial, which studied the medication Gomekli (mirdametinib). Samantha took the first dose of medication in December 2020. 'The beginning of the trial was rough. I got a bad, painful acne rash, nausea, and vomiting was the worst part. I had no appetite, and I'd try to eat something and then immediately throw up,' said Samantha. After about six months of participating in the trial, she was ready to give up until she received good news. 'My mom and dad were moving my brother to college and big things for the boys always turn into something about me and so I wanted to be respectful, so I asked mom if she had two minutes to walk away and hear good news,' said Samantha. She shared that the doctors informed her that her tumor had shrunk by 82%. By the end of the trial, she had 90% shrinkage by volume and her pain was significantly reduced. 'Before the trial… even putting on a t-shirt or bra would hurt it. I'm a very physical touch person and love hugs; hugs would hurt. Coughing too hard would hurt, sneezing would hurt,' said Samantha. The Food and Drug Administration (FDA) approved Gomekli in February 2025 for adults and children with NF1-PN. The approval was based on the trial Samatha participated in. 'A few years ago, surgery was the only option, which can lead to many complications, and up to approximately 85% of plexiform neurofibromas cannot be completely removed through surgery,' said Nghiemphu. In addition to Gomekli, there is one other FDA-approved medication for the treatment of PN in pediatric patients with symptomatic, inoperable NF1-PN. However, it is not approved for adults. 'It is very recent that we finally have medical treatments for NF1-PN, but they are not perfect and do not work for everyone, and we hope that we can continue with research programs that help patients with these rare conditions so they can lead better lives,' Nghiemphu said. Humor, advocacy helped them cope While they were close before they learned they had NF1-PN, the condition brought Michelle and Samantha closer. Michelle said humor helped strengthen their bond. 'I would mock her. I don't mean that in a nasty way but I had to make her laugh. It kind of stinks. Why my kid? Why is this happening? We tried really hard to laugh at everything,' she said. When Samantha complained about the pain in her plexiform, they nicknamed it plexi, referring to it in a silly, whiny voice. 'I'd say, 'My plexi, you're hurting me,'' said Samantha. Then they'd laugh together. While waiting at the hospital, she also relied on her mom's humor to help pass the time. She recalled a time they waited in radiology for images and played the game Heads Up. 'We were shaking money makers and my dad said, 'I'm not doing that, that's all you.' We wrestled, we stop drop and rolled,' said Samantha. Michelle went all out. 'I know people were staring at us, but the fact of the matter is that everyone who was staring was wishing their mom was just as much of a lunatic as I am and that they were playing it too,' she said. 'If I can keep one mom from feeling that fear because Samantha and I are making fun of each other, then awesome.' They also share a passion for spreading awareness about NF1-PN by speaking and attending events with the Neurofibromatosis Network and the Children's Tumor Foundation. Samantha has also advocated on Capitol Hill and continues to share her story to inspire others. 'I let [this disease] define me for a while, and I was told I was never going to dance again, and dance was my first passion and first love, and two years later, after my first surgery, I was back dancing on my high school dance team,' she said. While it wasn't easy, she also excelled academically in high school. Today, she is attending college and working toward becoming a certified nursing assistant as she aspires to eventually become a registered nurse.
Fox Sports
04-03-2025
- Automotive
- Fox Sports
2025 NASCAR odds: Christopher Bell favored to win at Phoenix
The NASCAR Cup Series heads to Phoenix this weekend and fans can watch all the exciting action on FS1. When it comes to the odds, bettors can also dive into that action and place wagers on which driver they think has what it takes to get into victory lane. The current favorite is Christopher Bell. He is on a two-race winning streak, and he won the spring race at Phoenix in 2024. Another driver to watch at Phoenix is long shot Katherine Legge. This weekend will be Legge's Cup debut, and this marks the first time a woman will compete in a NASCAR Cup race in seven years. The last to do it was Danica Patrick. Let's check out the odds for every driver in the field at DraftKings Sportsbook as of March 4. Shriners Children's 500 2025 Christopher Bell : +500 (bet $10 to win $60 total) Ryan Blaney : +600 (bet $10 to win $70 total) Kyle Larson : +650 (bet $10 to win $75 total) William Byron : +800 (bet $10 to win $90 total) Joey Logano : +850 (bet $10 to win $95 total) Denny Hamlin : +1000 (bet $10 to win $110 total) Chase Elliott : +1000 (bet $10 to win $110 total) Tyler Reddick : +1200 (bet $10 to win $130 total) Chase Briscoe : +1200 (bet $10 to win $130 total) Ross Chastain : +1400 (bet $10 to win $150 total) Kyle Busch : +2200 (bet $10 to win $230 total) Chris Buescher : +2200 (bet $10 to win $230 total) Ty Gibbs : +2500 (bet $10 to win $260 total) Josh Berry : +3000 (bet $10 to win $310 total) Brad Keselowski : +3500 (bet $10 to win $360 total) Bubba Wallace : +5000 (bet $10 to win $510 total) Austin Cindric : +5500 (bet $10 to win $560 total) Alex Bowman : +5500 (bet $10 to win $560 total) Daniel Suarez : +7000 (bet $10 to win $710 total) Carson Hocevar : +9000 (bet $10 to win $910 total) Ryan Preece : +10000 (bet $10 to win $1,010 total) Noah Gragson : +10000 (bet $10 to win $1,010 total) Cole Custer : +10000 (bet $10 to win $1,010 total) Erik Jones : +13000 (bet $10 to win $1,310 total) Shane van Gisbergen : +15000 (bet $10 to win $1,510 total) Michael McDowell : +15000 (bet $10 to win $1,510 total) AJ Allmendinger : +15000 (bet $10 to win $1,510 total) Riley Herbst : +20000 (bet $10 to win $2,010 total) Justin Haley : +20000 (bet $10 to win $2,010 total) Austin Dillon : +20000 (bet $10 to win $2,010 total) Todd Gilliland : +25000 (bet $10 to win $2,510 total) Zane Smith : +30000 (bet $10 to win $3,010 total) Ricky Stenhouse Jr. : +40000 (bet $10 to win $4,010 total) John Hunter Nemechek : +40000 (bet $10 to win $4,010 total) Ty Dillon : +50000 (bet $10 to win $5,010 total) Cody Ware : +50000 (bet $10 to win $5,010 total) Katherine Legge: +50000 (bet $10 to win $5,010 total) Want great stories delivered right to your inbox? Create or log in to your FOX Sports account , and follow leagues, teams and players to receive a personalized newsletter daily! recommended Get more from NASCAR Cup Series Follow your favorites to get information about games, news and more in this topic
Yahoo
19-02-2025
- Health
- Yahoo
Shriners Erie Telethon 2025 surpasses previous year's donation total
The Shriners Erie Telethon broadcast live on JET 24 Tuesday night was a resounding success. The 12th annual event aimed to raise more than last year — and did just that! More than $28,000 dollars was raised as of Wednesday morning, which is 2,000 more than last year's total! The telethon, which was broadcast live last night from the Millcreek Mall, featured stories of patients, families and staff sharing the impact Shriners has had on their lives. JET 24 live from 12th annual Shriners Erie Telethon Donations to the telethon help transform the lives of children with neuromusculoskeletal conditions and other special healthcare needs. Donations make an enormous difference since Shriners Children provides care to children regardless of their family's ability to pay or insurance status. 'It's really important for our mission. It's one of our bigger events of the year and it really helps to support our mission throughout the whole year,' said Michael Widrig, manager of marketing for Shriners Children's Erie. 'In addition to the funds that we're able to raise, you know just sharing our stories with the community and helping more families connect with our care and the various services that we offer is so important. Donations are still being accepted here. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
USA Today
30-01-2025
- Sport
- USA Today
How to watch East-West Shrine Bowl today: Time, TV channel
The 2025 East-West Shrine Bowl is today. The oldest college all-star game in the country, dating back to 1925, it showcases some of the best player talent for those preparing for the NFL draft. It also raises money for Shriners Children, which provides excellent care for children with orthopedic conditions, burns, spinal cord injuries, and cleft lip and palate, regardless of the families' ability to pay for services. After three days of practice at North Texas University in Frisco, Texas, now the prospects will compete on a big stage. NFL teams have had evaluators on site for the practices and now will use game film to continue to evaluate players for the draft. Just when it had been a few weeks since a Thursday night game in the NFL, we get one more Thursday night football game to watch, but this time we can see NFL draft prospects alongside and against one another. Here's how to watch the Shrine Bowl, including time, TV schedule and streaming information: What channel is the 2025 East-West Shrine Bowl on today? Time, TV schedule TV channel: NFL Network Date: Thursday, Jan. 30 Where: AT&T Stadium, Arlington, TX Start time: 8 p.m. ET (6 p.m. Arizona time) The 2025 East-West Shrine Bowl will air on NFL Network. Mike Yam will call the game from the booth with analysts Bucky Brooks and Isaiah Stanback, while Jane Slater will report from the sideline. Where to watch 2025 Shrine Bowl on livestream Streaming options for the game include NFL+ and Fubo TV. 2025 East-West Shrine Bowl roster Check out the full roster for both the East and the West squads. Get more Cardinals and NFL coverage from Cards Wire's Jess Root and others by listening to the latest on the Rise Up, See Red podcast. Subscribe on Spotify, YouTube or Apple podcasts.
