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Global Genes StarStudded 6th Annual RARE Tribute to Champions of Hope and


first_imgGlobal Genes hosted the highly anticipated and globally-recognized 6th Annual RARE Tribute to Champions of Hope Awards and RARE Patient Advocacy Summit on September 14-16.The weekend-long festivities culminated Saturday at the Tribute award program hosted at the City National Grove of Anaheim, where more than 700 patients, celebrities, advocacy leaders, biotech and pharmaceutical executives, healthcare professionals, philanthropists, and scientists came together to support the fight against rare disease. The heartfelt awards, presentations, and performances raised over $1.75 million for rare disease education, awareness, advocacy, and patient scholarships to access programs. Of the total funds raised, more than $75,000 was donated through an on-stage ask at the Saturday evening event in direct support for the Global Genes RARE Patient Impact Grant Program.The weekend celebrations were a star-studded affair with celebrity award presenters and guests in attendance including Jim O’Heir (Parks and Recreation), Madison McLaughlin (Supernatural, Arrow), Jillian Rose Reed (MTV’s Awkward), Shaka Smith (Fit Club Host), Maria Quiban (Good Day L.A. Meteorologist), and star from the 2017 hit film Everything Everything, Danube Hermosillo. Jillian Escoto, co-host of Valentine in the Morning on radio 104.3 MYfm hosted the Tribute program and shared personal stories of her ongoing battle with the rare disease, multiple sclerosis.As the Saturday evening program began, Nicole Boice, Founder and CEO of Global Genes, welcomed guests with the toast, quoting a rare disease pioneer Henri Termeer: “Rare Disease is not easy, but if we stay committed, and see it through, we can change the world for patients and families everywhere. We need to stay the course.” Boice then invited 8-year-old Gavin Stevens (NBC’s Little Big Shots) to the stage to kick-off the event by singing “The Star-Spangled Banner.” Gavin was born with Leber congenital amaurosis, a rare genetic retina condition that has rendered him blind.Champion of Hope award recipient Sparsh Shah (NBC’s Little Big Shots and YouTube sensation) delivered the second performance of the night with his impressive cover of Eminem’s 2010 hit “Not Afraid”, which has over 8 million views on YouTube. Emmy nominated singer-songwriter, Andrew McMahon, performed multiple hits including “Cecilia and the Satellite” and shared his own personal journey with leukemia. Season 12 contestant from NBC’s The Voice, Stephanie Rice, closed out the night with her powerful vocals and heart-felt lyrics.The three standout honors presented during the evening were RARE Champion of Hope – Medical Care and Treatment: Antonie Kline, M.D., Medical Director, CdLS Foundation and Director of Pediatric Genetics, Greater Baltimore Medical Center; RARE Champion of Hope – Advocacy: Sparsh Shah; and RARE Champions of Hope – Advocacy: Kevan Chandler, Ben Duvall, Philip Keller, Tom Troyer, and Luke Thompson of “We Carry Kevan”.At the Tribute, Global Genes announced that next year’s 7th Annual RARE Tribute to Champions of Hope and Patient Advocacy Summit will take place October 4-6, 2018.last_img read more


By WVUA 23 Reporter Ivy Ervin and WVUA 23 Digital


first_imgBy WVUA 23 Reporter Ivy Ervin and WVUA 23 Digital Reporter Savannah BullardThe countdown to Thanksgiving is on, and there are only three days left until Turkey Day. To guarantee maximum safety this holiday season, the Northport Fire Department and Publix teamed up to offer tips on how to keep a call to the fire department out of this year’s Thanksgiving plans.On Nov. 17, Northport firefighters held their sixth-annual “Turkey Frying Gone Wrong” demonstration. They used fast and loose turkey frying techniques to demonstrate how using the frying method can lead to a devastating holiday.“What we did today is a demonstration that shows what can go wrong when you try to fry a turkey,” chief Jason Norris said.The U.S. Fire Administration says cooking fires in residential buildings occur more often on Thanksgiving Day than any other day of the year. Norris said turkey fryer fires are often caused by the same few issues.“We did the two things that a lot of people do wrong,” Norris said. “We had too much grease in the cooking pot, and the turkey was not completely thawed.”If frying a turkey is non-negotiable for Thanksgiving, it is important to follow the steps to make sure the process is done safely, or consider having a professional do it instead. Otherwise, you might have the fire department showing up  on Thanksgiving day, and it will not be a happy occasion.“We don’t recommend you frying one at home,” Norris said. “If you want to fry a turkey, we recommend that you find someone, a restaurant or some professional to fry it for you for safety reasons.”After the demonstration, which featured an explosion fit for an action movie, firefighter Forrest Harvey explained how far that fire could travel at someone’s house if they tried to fry a half-thawed turkey with too much grease.“I mean, it would just follow the water, you know, it would just spread with the grease, and then there’s not much you can do at that point because it’s just out of control then,” Harvey said. “Then obviously we’d have to show up and distinguish it.”Norris gave some advice to those who are still set on frying their turkeys.“You check the oil level by putting water into your pot to begin with,” Norris said. “Dip the turkey in it to see how much the liquid rises, and that way you can determine the appropriate amount of oil to put in it so it doesn’t overflow.”So remember, check the temperature, don’t use too much grease and thaw the turkey completely. Or, find a professional to take care of the dirty work instead.Another tip is once the turkey is thawed, pat it dry and get rid of excess water to prevent grease from splattering. At the end of the day, a successful Thanksgiving is one without the fire department involved.last_img read more


KEIRON Cunningham said it was poignant Jordan Turn


first_imgKEIRON Cunningham said it was poignant Jordan Turner scored Saints’ winning try on Thursday night – but pointed to a massive squad effort too.“I’d have taken the draw to be honest!” he said. “I’m not sure the game deserved a loser at times. Both sides were great for a period, the defences were good too. They are so quick around the middle and have four dummy runners coming at you that at times we had to survive.“We did that, had some subs left towards the end and they did a great job. I knew we would do something – I knew we would get a crack at something at the end and we did. I am really happy with the win and the two points.“But the performance was the biggest thing for me. We never gave up.“We have players here that are more than able to express themselves with the ball. Quinlan turned up on everything and reinforced why he is here and I thought it was good how we moved the ball after we made the break too.“But all credit to Jordan Turner. Our left edge has come under some flack over the last couple of weeks and it was poignant he put the ball down to win the game.”He continued: “I thought Mark Flanagan was massive. He grounded the ball after Turner had made that wonderful tackle. We did the little things we have have been missing over recent weeks and in the end we found a way to win the game. Our fight for each other on both sides of the ball was phenomenal because for large portions of the game we were on the back foot.“We lost Jon Wilkin to a thumb injury. We don’t know the extent yet. It hurt us time wise as he can do 80 minutes for you. Mark Flanagan went through a lot of pain tonight for the side and played 80 minutes.“He was phenomenal; he work rate was up there. Yes he doesn’t make 100 metre breaks that everyone likes but he works hard and tides up for us. He did a great job for us.”Saints are next in action on Friday July 24 at Langtree Park when they face Hull KR. You can buy your tickets from the Ticket Office at Langtree Park, by calling 01744 455 052 or by logging on here.last_img read more