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
“Everyone on death row has a lawyer [either through a CCR office or the registry] for the first time ever.” Panel told every death row inmate now has a lawyer October 1, 2000 Gary Blankenship Senior Editor Regular News The commission is getting detailed information from the CCR offices that allows tracking of cases and expenses. As noted by Berberich and others, the time has been significantly reduced in retrieving necessary records because of the legislature’s investment in improved technology. “They are holding the hearings and they are filing the motions [in death appeals],” Burt said. “Cases are moving through the system faster than ever.” He also pointed to the report at the meeting that another five cases are ready for the Governor’s review. That’s in addition to the five executions that have been held this year — the most in any recent year. (In 1999, when there was a moratorium for part of the year because of a challenge to electrocution as the method of execution, there was one inmate put to death. That compares to four in 1998, one in 1997 and two in 1996.) Burt said Florida’s success may have national implications. He noted that ABA President Martha Barnett has called for a moratorium on executions because of perceived problems in the system. “I think as the discussion on a moratorium continues, you will see Florida used as a model [of how the system can proceed expeditiously while protecting inmates rights],” he said. Panel told every death row inmate now has a lawyer Senior Editor It isn’t the kind of news that grabs headlines, but the Commission on Capital Cases recently reviewed information that showed that death penalty appeals are being handled with fewer problems and unnecessary delays. And for the first time ever, every death row inmate has an attorney. While much of the year has been marked by rhetoric of legislators critical of the courts for various death penalty issues, the commission, which has both lawmakers and judges as members, has been working to end the gridlock on capital appeals. At its September 8 meeting, it heard evidence that delays and administrative problems are being overcome. All three regional capital collateral representatives reported holding more hearings this year than last and fewer delays in scheduling hearings, preparing briefs and motions, and other work factors. Roger Maas, executive director for the commission, also reported that private attorneys hired to handle overflow cases are hard at work. All but one has filed the initial Rule 3.850 petitions or got court permission for an extension to file. In the single exception, nothing was done and that attorney has been replaced, he said. The state has a total of 123 private attorneys on its “registry” who are willing to handle overflow cases from the regional counsels, Maas said, but 70 of those attorneys don’t have any cases. He said the large number was recruited because of an anticipated dual track system of handling direct and collateral appeals simultaneously. But the state law creating that system was struck down as unconstitutional (for other reasons), and the Supreme Court’s proposed dual track rules were put on hold after several objections were filed. Maas also reported that while the state budgeted $22,500 for private attorneys to file 3.850 motions, the actual cost so far has averaged $16,000. Another major time savings in the system has been improved records retrieval. The legislature approved a central repository for records that are required on collateral appeals, and approved equipment to record the documents on CD-ROM disks. CCR offices have also been provided with high-tech CD readers and high-speed printers for accessing the information. Commission member and state Rep. Sally Heymann, D-North Miami Beach, noted that records now can be retrieved in one to three days instead of the months it used to take. “This is responsiveness on legislative action where we put money in to expedite this,” she said. Jim Berberich, director of the Department of State’s Bureau of Archives and Records Management, where the records are stored, said his office has conducted training courses for CCR staff and others who need access to the records. He added that before the end of September, the bureau would be online with the various offices that need the records. “Things really have improved,” Berberich said, noting it was about two years since the legislature approved the central repository for the records. Commission members expressed approval at the improvements. “The commission is pleased with the response and the handling of the cases,” said former Supreme Court Justice and commission Chair Parker Lee McDonald. “Absolutely,” said commission member and Sen. Locke Burt, R-Ormond Beach, when asked if delays were being reduced in the appeals. While it may be a while before the public sees a reduction in the time between sentencing and execution, Burt ticked off a number of refinements:
Share this:FacebookRedditTwitterPrintPinterestEmailWhatsAppSkypeLinkedInTumblrPocketTelegram The Eagles have shown a lot of resilience and game management so far at the 2019 AFCON, with many late goals to win games. They have also won four matches by a one-goal margin.In their first two matches against Burundi and Guinea, they won games 1-0 by scoring after the seventieth minute.Against Cameroon in the Round of 16, they came back with two quick-fire goals after going into the break behind.And yesterday against the South Africans, they left it till the 89th minute despite the pressure of losing a lead. VAR DramaExperiencing VAR at the stadium is a totally different experience from watching on TV.The screens at the stadium don’t show replays so there’s so much tension and uncertainty.First there was despair among the Nigerian fans when South Africa scored, then joy when the referee’s assistant’s flag went off.Then there was confusion as many of the fans were unaware that VAR comes into effect at the quarter final stage.Then it was back to despair as the referee signaled for a goal after what seemed like years of waiting.Eagles’ First Nght GameThe heat in Egypt has been wearing with the daytime temperature in Cairo at 38 degrees Celsius yesterday.Meanwhile, the Eagles have played all of their matches in Alexandria, which is slightly cooler but still well in the 30s.Luckily, the Eagles’ first experience of playing in Cairo was at night. And it will be the same in the Semi Final against either Algeria or Ivory Coast.Set Piece KingsThe Eagles have scored three of their seven goals from set plays, a notable statistic considering this has never been the forte of the Super Eagles and African teams in general.However, William Troost Ekong scored the winner off a corner kick yesterday, replicating his centre back partner Kenneth Omeruo’s winner against Guinea.Nigeria’s first goal against Cameroon was the result of a free kick.Set plays are an indication of a team spending time practicing in training and is a good sign as the Eagles advance into the semi finals. Another Late Goal Wins It
Ghana defender Harrison Afful is suspended for the second leg clash of the CAF Champions League final.The 26-year-old picked up a yellow card in Esperance’s 1-1 draw away to Al Ahly in the first leg game on Sunday.The 55th minute booking now sees Afful suspended for the second leg match for accumulated cautions.The Ghana international picked up a yellow card in last month’s semi final match against TP Mazembe.This means the ex Asante Kotoko defender will not be playing in his third straight Champions League final in a fortnight in Tunis.Afful’s solitary strike won the African Cup for the Tunisian club last season.
The Fallen Heroes Foundation of the Guyana Police Force (GPF) on Friday morning handed over just under $800,000 to nine families of Police Officers who were killed in the line of duty.Abena LaRose, wife of a Fallen Hero receiving her cheque from the Commissioner of PoliceThe cheques were handed over by Police Commissioner Leslie James at the Police Mess Hall, Eve Leary.Those who received the donations were Abena LaRose, Treyona Alias, Carlene Mickle, Neila Bollers, Rishta Cusbert, Roxanne Gilkes, Neyola Persaud, Adacia Johnson and Iola Bascom.Some 23 children of the said families will also soon receive desktop computers from the Foundation which is expected to enable them to pursue their academics.President of the Foundation, Dr Raphael Massiah noted that the aim of the organisation is to continue to support the families of the fallen heroes.He noted that the support of Police Commissioner, Leslie James, his Deputies and others have made it possible and as such, noted that the donations are commendable.“Today is a significant but simple ceremony where we have pledged and we were actually created to treat with the education and welfare of the children for fallen heroes and we have also with a great degree of efficiency effectiveness over the last couple of year” Massiah noted.Fallen Heroes President, Dr Raphael MassiahHe further stated that many are the stories of struggling children without fathers who have to provide for themselves.One such story comes from Linden where a child of a fallen hero is forced to leave her home at 06:00h in order to cycle to school on time.The Top Cop reiterated the stance of the Police Force in maintaining that the families of fallen heroes are provided for. Further, he noted the importance of showing compassion to the families.As such, he stated “We are fully committed to this cause and whenever ranks or [a] rank falls in the line of duty, it is of course known to us and today, this activity is another one such occasion where we will display such compassion” James said.Also in attendance at the small gathering was the Deputy Commissioner of Administrations, Paul Williams.
With the new course comes a major elevation change. The first half of the race will be almost entirely downhill, which should lead to dramatically lower times. That’s good news for race officials, who know that the potential for lower times attracts better athletes, which raises the profile of the event. Dr. William Burke, the race’s founder and president, has long sought to elevate Los Angeles’ marathon to the level of New York and Boston and believes lowering first-place times is a step in that direction. “We’re on the way,” Burke said. “This is something we’ve been working on for seven years, and our staff has gone through a lot of trials and tribulations. But in the long term it’s going to be good for the race and the city. It’s going to give us better times and bigger numbers, and that’s the big thing.” An estimated 26,000 runners will take to the 26.2-mile course, but only a handful have a realistic chance to finish first and claim the prize money, which is the other big factor in attracting top-level runners. To that end, the race has taken a step backward. The first-place prize for men and women has decreased from $35,000 to $20,000 – plus a new car – but the race’s “challenge” competition remains in place. Because of the “challenge,” the elite women will get a 19-minute, 51-second head start over the elite men. The first runner to cross the line will get a $100,000 bonus. Last year, there was a margin of 16:30 between the top man, Benson Cherono, and woman, Lidiya Grigoryeva, who claimed the bonus. “It all comes down to money,” said Larry Barthlow, the race’s elite athlete coordinator. “How deep are your pockets? The deeper your pockets, the better your athletes are going to be.” Cherono, who finished in 2 hours, 8 minutes and 40 seconds, and Grigoryeva (2:25:10) both set course records last year, but neither runner is back to seek a repeat win on the new course. The favorites among the men are, not surprisingly, three Kenyans: Wilson Komen, Moses Kororia and Fred Mogaka. Among them, Mogaka’s time of 2:12:03 in Melbourne last year is the best personal record in the field, so none of the three seems likely to threaten Paul Tergat’s world-record time of 2:04:55. “It’s a smaller (elite) field and there are a couple good unknown guys,” Barthlow said. Among the women, Lydia Kurgat (Kenya), Ramilia Burangolova (Russia), Abebe Tola (Ethiopia) and Alena Vinitskaya (Belarus) are the favorites, but the real drama in the race is back in the pack. Because the start and finish lines are now so far apart, race participants will be able to ride, free of charge, MTA trains that serve the area. But don’t get too comfortable with the new course. As part of his constant tinkering with the course, Burke has already identified changes he will make next year, and some thought has been given to starting the race deeper in the San Fernando Valley. But first, there’s this year’s race to run. Burke is confident that the new course will be a success, but still admits to moments of anxiety as the start time draws near. “I have two nightmares,” Burke joked. “One is that it’s race time, TV is ready to go and there are still hundreds of people streaming out of the subway tunnel. I know that’s not going to happen. The other is that we get lost on the route and everybody ends up at my house.” [email protected] (818) 713-3611 160Want local news?Sign up for the Localist and stay informed Something went wrong. Please try again.subscribeCongratulations! You’re all set! LOS ANGELES – Los Angeles’ marathoners no longer will be running in circles. In its 22th year, the Los Angeles Marathon has undergone its most dramatic change in an effort to boost the race’s international profile and feature some of the more historic parts of the city. The race, which begins Sunday at 8:15 a.m., will be run in more of a straight line, beginning near Universal Studios and finishing at its downtown location near the Central Library. That’s a major change from previous years, when the course consisted of a loop around downtown and Hollywood. Runners will pass the Hollywood Bowl, the Hollywood Walk of Fame, Staples Center and some of the city’s oldest and most historic neighborhoods, and race organizers hope the pace will be faster than ever.