The Boler-Parseghian Center for Rare and Neglected Diseases (CRND) will be hosting a two-day conference dedicated to raising awareness and understanding of rare diseases starting Friday.According to CRND’s website, the annual conference will feature speeches, forums, interactive stations and other events by a variety of medical and research experts from across the nation. Kasturi Haldar, the director of CRND, said the meeting brings together a convergence of researchers, students, trainees and patients.“There are 7,000 rare and neglected diseases as defined by U.S. federal guidelines, and so what this means is one in 10 people suffer from a rare and neglected disease,” Haldar said. “These diseases are very poorly understood, so there is need to increase awareness, there is need to understand them better and there is a very large unmet need to develop therapies for these diseases.”Because of the large number of rare diseases, the conference is intended to touch on “reasonably broad areas,” Haldar said, such as brain afflictions, blood and lung disorders.“Mechanistically, there’s a huge amount of discovery because [rare diseases] are so under-researched, so it’s a great place for students and trainees who want to understand how a disease is caused but then also for students who are interested in careers in medicine or biology or research in general,” she said.The keynote speakers, Haldar said, are Nicole Boice, the founder and CEO of Global Genes, and Rob Long, a former college football player who survived a rare brain cancer and is now the director of strategic development for Uplifting Athletes.“Really there’s a tremendous sense of hope and excitement,” Haldar said. “We have seen a lot of progress in the development of programs and rare and neglected disease here at Notre Dame, but also nationwide and in the world.”Launched nine years ago as a lunch involving about 20 students, the event has gradually expanded after CRND’s development of an outreach program, Haldar said. By emphasizing the “empowerment of patients” as a major theme for this year’s conference, she said she expects about 170–175 attendees.“There will be a much larger and integrated focus on patient engagement and the activities of our students,” Haldar said. “We’ve created booths, and at these booths, we have students who are partnering with patients to present their disease, so the students will speak on a molecular genetic basis and the patients will speak to the clinical path that they have been down.”Another new addition, Haldar said, is that patients will be introducing each session of the conference.“We’re trying to bring this whole process together, all of the different components that go into supporting and informing rare and neglected diseases research,” Haldar said. “ … The students learn a lot from the patient community, and obviously it’s through the work that the students do that we’re able to support the patients.”According to the conference’s website, patient advocacy groups on campus will also be in attendance. Senior Hannah Mumber, the co-president of RareND, said RareND will give “teaser talks” and presentations on how the club focuses on rare disease awareness and patient advocacy on campus.“The conference allows all sectors of the rare disease community to come together to share experiences and recent research,” Mumber said. “ … I expect the atmosphere to be very collaborative and supportive as always and am most excited to meet the patients and their families.”Junior Megan Crowley, a student who will her share some of her experience of growing up with Pompe disease, will be speaking Saturday after her father, John Crowley, who helped find a cure for Pompe.Editor’s note: Crowley spoke to The Observer with the assistance of her nurse, Emma Holly, who is quoted below.“She’s going to talk about growing up and basically how, through her life, her dad has been helping to try and save her life,” Holly said. “A lot of people view her dad as a hero, but to her it’s just her dad, so she’ll be talking about that.”As it is Crowley’s second year attending the conference, Holly said Crowley hopes more people will attend the conference and that it raises more awareness about rare diseases.“She thinks it is important that people are aware of rare disease day,” Holly said. “ … If there’s enough people getting behind [a rare disease] and supporting it together, then it really makes it less rare [because] there’s more awareness brought to it.”Tags: Megan Crowley, Rare Disease Day Celebration, rare diseases, The Boler-Parseghian Center for Rare and Neglected Diseases
Notre Dame announced in an email that 21-year-old senior Annrose Jerry’s body was recovered from St. Mary’s Lake on Friday around noon. There is no sign of foul play.The body is scheduled for an autopsy Saturday morning at the Northeast Indiana Forensic Center, Sam Walsh of the St. Joseph County Coroner’s Office confirmed. via Google Maps Jerry, who was living in Breen-Phillips Hall, was reported missing after last being seen Tuesday at 8:45 p.m. near the Coleman-Morse Center. The Indiana State Police issued a Silver Alert on Thursday and said Jerry was “believed to be in extreme danger and may require medical assistance.” The Silver Alert was canceled at about 2:45 p.m. on Friday.According to an email obtained by The Observer, on the days she was reported missing, Jerry had missed an appointment at the University Counseling Center, failed to show up to class and missed Folk Choir practice for the first time this semester.Jerry was a member of the Folk Choir and Glynn Family Honors program, among other activities.On Thursday night, director of Campus Ministry Fr. Pete McCormick led a prayer service in Breen-Phillips to pray for Jerry’s safe return.Authorities arrived at a part of the lake directly across from Lyons Hall on Friday morning. At approximately 11:45 a.m., police told all unauthorized personnel to “clear the area” and boat crews were seen entering the lake. “It is with heavy hearts that we write to share with you that Annrose Jerry, a senior science-business major who lived in Breen-Phillips Hall, has died,” said the email announcement, which was signed by University President Fr. John Jenkins, dean of the College of Science Mary Galvin and vice president for student affairs Erin Hoffmann Harding.A Mass was held on Friday at 9 p.m. in the Breen-Phillips Hall Chapel.“My heart is so heavy, and I share in sorrow with you,” wrote Angela Hollar, the rector of Breen-Phillips Hall, in an email to the dorm community.The University Counseling Center (574-631-7336) and Campus Ministry (574-631-7800) are both available to support community members during this time.Tags: Annrose Jerry, body found, St. Mary’s Lake
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RelatedPosts Lampard: I still have confidence in Tomori Ighalo: My best moment as ‘Red Devil’ Mane double eases Liverpool to win over 10-man Chelsea Chelsea manager Frank Lampard said Olivier Giroud could leave Stamford Bridge this month, with Serie A leaders Inter Milan reported to be in pole position to sign the French striker. Sky Sports reported on Friday that France’s World Cup winner Giroud, whose Chelsea contract expires at the end of the season, has agreed a 2-1/2 year deal to join the Italian club. Lampard, whose side are fourth in the Premier League, said Giroud’s departure is not necessarily linked to Chelsea signing a replacement and the player would only leave if the deal suits all parties involved. “With Oli the situation is if it’s right for everybody and first and foremost that’s the club because he’s under contract and then we will look at whether he can leave. “He’s been a great professional here and trained brilliantly even without getting the opportunities. “I hold him in high regard but I still have to make a decision for the club and nothing’s done yet. “Everyone’s talking about it so I am not going to beat around the bush; I think his agent has spoken to the club. “But until we decide it’s the right thing then it’s not done,”Lampard told reporters ahead of Chelsea’s Premier League match against Burnley on Saturday. Giroud has not played for Chelsea since the end of the November, with Tammy Abraham cementing his place as the club’s first-choice striker since Lampard’s arrival. Abraham has scored 12 league goals this season and been in Gareth Southgate’s last two England squads. He scored his first England goal against Montenegro in November and is likely to get another chance to impress against Italy and Denmark in March, with captain Harry Kane ruled out with a hamstring injury. “Well first of all with Harry Kane, it’s not nice to hear even though it’s a competitor within the league of an injury to a player. “Tammy’s got himself into regular squads with the goal-scoring that he’s done with us. “I am delighted with his progression. For me, yes he can play at the very highest level but he’s still in those early stages,” Lampard said. Chelsea will be aiming to consolidate their place in the top four when they face Burnley following home defeats by Bournemouth and Southampton last month. Lampard ruled out forward Christian Pulisic for a “few weeks” after the United States international suffered an adductor injury in training.Tags: ChelseaFrank LampardOlivier GiroudPremier League
The ESI team is delighted to announce that former Ballon d’Or winner and Chelsea legend Ruud Gullit will be the keynote speaker at the ESI Super Forum on 22nd March. For those that immediately ask, what does Gullit have to do with esports – the Dutchman has recently launched Team Gullit; a FIFA esports academy looking to help educate and nurture up and coming stars and transform them into the finished product.The ESI Super Forum is taking place on March 22nd at Stamford Bridge. It will feature over six panels, 30 speakers and a networking and exhibition area.Gullit returns to Stamford Bridge, the home of Chelsea football club – a team he made 49 appearances for, scoring 4 goals. He will be on hand to discuss his entrance to esports through the Team Gullit academy and will share just how and why he decided to get involved.We’ve seen many teams get involved, but it’s rare for an individual of the stature of Gulllit to launch his own independent venture and commit to mentoring youngsters who wish to make it – not in the world of football, but rather football simulation. Gullit said: “I’m looking forward to taking to the stage at the Esports Insider Super Forum to discuss the sports and esports crossover, and the founding of and plan for, Team Gullit.“I may be biased but it’s great that the event is taking place at Stamford Bridge too. As a place close to my heart it will be a fantastic opportunity to make an impact there again, and I’m sure there’ll be plenty of good esports chat with a host of industry leaders.”Gullit will be joined by a host of other great industry speakers as the entire day examines the fascinating crossover between esports and the traditional sports world. Over 175 clubs have entered the space and that growth looks set to continue. Partnerships between football clubs and players specifically are evermore plentiful but they vary greatly in their format. For example there is the case of PSG, Valencia and Schalke who’ve entered using their own brands, and then there’s the likes of North, a joint collaborative project created by FC Copenhagen and Nordisk Films. We’ve also seen prominent names such as Gerard Pique (eFootball.Pro), Riyad Mahrez (Ares Esport), Zlatan Ibrahimovic (Challengermode) and more invest in some form in the esports industry. You can read more about why sports clubs and leagues are entering the space, and indeed how, here. Whether it’s through sport simulation, or esports continues to franchise leagues – there’s little doubt it will remain of constant interest.“I’m looking forward to taking to the stage at the Esports Insider Super Forum to discuss the sports and esports crossover, and the founding of and plan for, Team Gullit”The ESI Super Forum will see six panels, a roundtable and Gullit speak amidst a busy day of networking and, one would hope, the forging of many valuable business relationships.There’s an exhibition space, plenty of time allowed for meetings and discussion, as well as a token ESI esports social tournament which one would assume will be extremely competitive. Other notable speakers include: Christian Sørensen – CEO – North, Mark Cox – UK Head of Publishing – Riot Games, James Dean – MD – ESL UK, Alex Grimonpoint – Player Engagement Director – Hi-Rez Studios, Nikolaj Nyholm – CEO – RFRSH and Nicolas Maurer – CEO – Team Vitality, amongst a host of others. After the day’s done and dusted, delegates and speakers are invited to the World Cup Bar situated at Stamford Bridge for a beverage or two before the official after party gets underway at Roman Abramovich’s personal Chelsea bar, Under the Bridge. SBC Global’s Betting on Football conference is running alongside the ESI Super Forum, meaning a host of top football clubs including Real Madrid, Man City, Juventus, AS Roma and plenty more as well as other industry stakeholders will be in attendance throughout the day and till late at Under the Bridge. There’s no other conference out there that covers the convergence of traditional sports and esports in quite the way that the ESI Super Forum will. To find out more and secure your place please click here.For sponsorship and speaker enquiries please email [email protected]
Alabama linebacker Eyabi Anoma is out of the NCAA’s transfer portal, according to multiple reports.The rising sophomore, who was the No. 4 overall recruit in the nation in the recruiting class of 2018, was reported to be in the portal on Tuesday, but a day later the Tuscaloosa News reported that coach Nick Saban said Anoma no longer was in it. AL.com confirmed the report, citing an unidentified source. A 5-star recruit, Anoma chose the Crimson Tide over numerous other offers, including from Georgia, Michigan and Florida. But the 6-foot-5, 245-pound edge rusher played in a reserve role last season, registering nine tackles in 12 games. Still, he was voted to the SEC All-Freshman team.Established last fall, the NCAA’s transfer portal, an online database, allows players to express their interest in transferring and allows interested teams to contact them. However, a player who enters the portal isn’t obligated to trasnfer.Anoma apparently has chosen to withdraw his name.
LIVE RACING TO RESUME ON FRIDAY AT SANTA ANITA WITH A 20 CENT SINGLE TICKET RAINBOW PICK SIX JACKPOT CARRYOVER OF $405,029, EIGHT CONSOLATION TICKETS EACH WORTH $14,203.10TRACK OPEN FOR SIMULCAST WAGERING WITH FREE PARKING & ADMISSION ON WEDNESDAY & THURSDAY AT 10 A.M. ARCADIA, Calif. (May 5, 2019)–Live racing will resume with an eight-race card on Friday at Santa Anita and fans will be greeted by a 20 cent Single Ticket Rainbow Pick Six Jackpot carryover of $405,029.With $212,693 in “new” money wagered today, Sunday’s total Jackpot pool reached $569,025. Although there was no Single Ticket winner, there were eight consolation tickets with six winners, each worth a hefty $14,203.10.Santa Anita will again be open at 10 a.m. on both Wednesday and Thursday for simulcast wagering in the Grandstand Paddock Room. General Admission and parking are free both days.Santa Anita also offers free Club House and General Admission, as well as free General Parking, on Fridays, as well as two dollar beers and six dollar Specialty Cocktails, sponsored by Woodford Reserve.First post time on Friday is at 1 p.m. and approximate post time for Friday’s third race, the beginning of the Rainbow Six, is at 2 p.m. PT. For additional information, please visit santaanita.com or call (626) 574-RACE.