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ALS Ice Bucket Challenge Donations Lead To Significant Gene Discovery

Jul 28, 2016 01:30 pm

Justin Timberlake: Profile

According to a paper published today in Nature Genetics, researchers part of Project MinE’s global gene sequencing effort, funded by The ALS Association through ALS Ice Bucket Challenge donations, have identified a new ALS gene, NEK1, which now ranks among the most common genes that contribute to the disease, providing scientists with another potential target for therapy development.

This was the largest-ever study of familial (inherited) ALS, involved contributions from over 80 researchers in 11 countries, and was led by John Landers, Ph.D., of University of Massachusetts Medical School in Worcester, Mass. and Jan Veldink, Ph.D., of University Medical Center Utrecht, in The Netherlands.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis. While 10 percent of ALS is familial, meaning it’s genetic, the other 90 percent of ALS cases are considered sporadic, or without a family history. However, it’s very likely that genetics contribute, directly or indirectly, to a much larger percentage of ALS cases.

Hundreds of celebrities took part in the ALS Ice Bucket Challenge in 2014, includingJustin Timberlake, Ben Stiller, Lena Dunham, Chloe Moretz, Justin Bieber, Carrie Underwood, Robert Downey Jr, Selena Gomez, Taylor Swift, Adam Levine, Oprah,Demi Lovato, Hilary Duff, Conan O’Brien and many others

“The discovery of NEK1 highlights the value of ‘big data’ in ALS research,” said Lucie Bruijn, Ph.D., M.B.A. “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” she said. “The ALSIce Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”

The ALS Association announced funding for Project MinE, an international effort to sequence the genomes of at least 15,000 people with ALS, in October 2014, which established the U.S. arm of the initiative with Dr. Landers’ research efforts. Project MinE was the brainchild of entrepreneur, and person living with ALS, Bernard Muller, who, along with another patient, Robbert Jan Stuit, saw an opportunity to expedite genetic understanding of the disease after a tour of a Research ALS Center in the Netherlands where thousands of DNA samples were stored and not being used because it was too expensive to do the research the Center wanted to do.

According to Muller, “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world. Thankfully, The ALS Association brought Project MinE to the United States. This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS. I’m incredibly pleased with the discovery of the NEK1 gene adding another step towards our ultimate goal, eradicating this disease from the face of the earth.

NEK1 was discovered through a genome-wide search for ALS risk genes in over 1,000ALS families, and was independently found through different means in an isolated population in The Netherlands. Further analysis in over 13,000 sporadic ALSindividuals compared to controls again revealed an overrepresentation of variants in the same gene. The variations discovered in the gene sequence are predicted to lead to gene loss of function. NEK1 is known to have multiple roles in neurons, including maintenance of the cytoskeleton that gives the neuron its shape and promotes transport within the neuron. In addition, NEK1 has roles in regulating the membrane of the mitochondrion, which supplies energy to neurons and in repairing DNA. Disruption of each of these cellular functions through other means has been linked to increased risk of ALS.

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said Dr. Landers. “It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed.”

Understanding NEK1’s role in disease will provide an important new target for therapy development. The ALS Associations is currently funding Drs. John Landers and Catherine Lutz, Jackson Laboratories, to develop novel mouse models to better understand the consequences of the loss of the protein’s function for the ALS disease process. They will provide rapid access to these models for the broader ALS research community as soon as they are generated. These tools are important for ALS drug development.

Funding for Project MinE also came through The ALS Association Georgia Chapter, The ALS Association Greater New York Chapter and New Amsterdam City Swim.

This August, The ALS Association is seeking to raise awareness and funds to finish what the ALS Ice Bucket Challenge started in 2014: an end to ALS. The new campaign, called Every Drop Adds Up, pays homage to the Ice Bucket Challenge, visually emphasizes the now iconic “bucket,” and builds on the idea that when people come together they can make big, impossible things happen. Visitwww.everydropaddsup.org to learn more.


Robin Roberts To Be Honored At Arthur Ashe Institute For Urban Health Sports Ball

Jul 28, 2016 12:30 pm

Robin Roberts: Profile

The Arthur Ashe Institute for Urban Health will host Sports Ball 2016, their 22nd Annual Black Tie & Sneakers Gala, on Wednesday, October 19th at the Grand Hyatt, 109 East 42nd Street in New York City.

Loreen Arbus, Disability Rights Activist, Altruist, Producer and Author; Dr. James E. Cottrell, Distinguished Service Professor & Chairman of Anesthesiology at SUNY Downstate Medical Center and Member of the Board of Regents at New York State Education Department; Howard Cross, Sports Analyst for NBC Sports, Senior Vice President of Cresa New York and NFL Super Bowl Champion; Richard Levychin, CPA, CGMA, Managing Partner, KBL LLP; Patrick J. McGovern, Senior Director, Government Affairs, Gilead Sciences, Inc.; and Robin Roberts, Co-Anchor, Good Morning America, and Author, will each be honored at Sports Ball with the Leadership Award.

Cheryl Wills, award-winning NY1 News Anchor and best-selling author will return to co-host the gala. She will be joined by David Ushery, award-winning NBC 4 New York Anchor, creator of The Debrief with David Ushery, and co-host of Moms and the City and a Dad named David, who will be co-hosting the SportsBall for the first time.

“Our 22nd annual gala is a milestone occasion and we are honored to celebrate it by honoring the legacy of our founder Arthur Ashe – the late tennis champion and humanitarian,” says Ruth C. Browne, CEO of The Arthur Ashe Institute for Urban Health. “Like Arthur, each of our honorees is a trailblazer and they exemplify their commitment to making the world a healthier and more equitable place.”

“I am delighted that this year for our 22nd Sports Ball, that we will have the opportunity to honor six such groundbreaking leaders, from the heights of sports, media, finance, and health care,” says Brett Wright, Board Chair of The Arthur Ashe Institute for Urban Health. “They all truly reflect Arthur Ashe’s philanthropic ideal of making the world a better place. I can’t wait for what will be a very special evening in the company of these worthy honorees.”

The funds raised at Sports Ball support the Institute’s innovative community health education programs and research initiatives. Arthur Ashe founded the Institute in 1992, in partnership with SUNY Downstate Medical Center, just two months before his death from AIDS and in response to the disproportionate amount of illness and death in urban communities from preventable causes. Arthur knew that many diseases, such as diabetes and hypertension, are the result of inadequate health care delivery, late detection and insufficient health education.

Loreen Arbus is currently the President of the Loreen Arbus Foundation, The Goldenson-Arbus Foundation and Loreen Arbus Productions, Inc. Her philanthropy supports a broad scope of interests, including advocacy for women and girls, as well as for the world’s largest minority, people with disabilities. She has established and funds many scholarships that both enhance and elevate social consciousness around her philanthropic interests – scientific and medical research, public policy, the arts, media responsibility, human and animal rights. Arbus holds the distinction of being the first woman to head programming for a U.S. network, a feat accomplished twice (both at Showtime and Cable Health Network/Lifetime). She has been twice nominated for an Emmy. She is the author of six books and numerous articles. Ms. Arbus’ many awards include The Heart of Giving Award presented by President Bill Clinton in 2001 and being chosen as one of the Leading Women Entrepreneurs of the World 2002. She serves on over a dozen nonprofit boards, including the Executive Committee of the Harvard Kennedy School of Government Women Leadership Board and Women Moving Millions. Ms. Arbus is also a high profile professional Argentine Tango choreographer and dancer.

James E. Cottrell, M.D., FRCA, is Distinguished Service Professor and Regional Chair of the Department of Anesthesiology at SUNY Downstate Medical Center, Lutheran Medical Center and Interfaith Medical Center, and past Chair of Kings County Medical Hospital Center. Dr. Cottrell has served as President of the American Society of Anesthesiologists (ASA), of the Society of Academic Anesthesiology Chairs, and of the Society of Neurosurgical Anesthesia and Critical Care (SNACC). His honors include Distinguished Service Awards from the ASA, SNACC and the New York State Society of Anesthesiologists, as well as the West Virginia University Distinguished Alumnus Award. He is a Member of the Board of Regents at New York State Education Department. Dr. Cottrell has been published in The New York Times, Newsday, and The Washington Post, and has appeared on ABC, NBC and Fox News. His writing includes the book Under the Mask, over 125 papers, and co-editing three major textbooks. He is currently Editor-in-Chief of the Journal of Neurosurgical Anesthesiology. He has delivered more than 200 presentations around the world. Dr. Cottrell has been Chairman of the AIDS Action Foundation, on the Board of God’s Love We Deliver, and Vice Chairman of the Board of Doctors of the World. He served as a Health Policy Advisor to Senator Edward Kennedy where he helped draft the first AIDSNon-Discriminatory Legislation.

Howard Cross is Senior Vice President of Cresa New York, who he joined with over 10 years of real estate experience. Howard is an exclusive tenant rep broker licensed in New York & New Jersey, and an accomplished public and motivational speaker. During the football season Howard can be seen as a sports analyst on NBC Sports and FOX, and heard as a sideline reporter on NY Giants Radio. Prior to joining the world of real estate, Howard spent 13 years in the NFL. He played his entire career with the New York Giants and was a major contributor in the Superbowl XXV championship. He returned to the Superbowl 10 seasons later when the Giants fell to the Baltimore Ravens. Howard is very active in the community, giving back via charities such asAutism Speaks, JDRF (Juvenile Diabetes Research Foundation), the Mental Health Association of New York City (MHA-NYC) and The Valerie Fund. He also makes frequent stops at schools and camps for kids.

Richard Levychin, CPA, CGMA is a Managing Partner with KBL, LLP, where he is the Partner-in-Charge of the firm’s Emerging Business Group. KBL is the winner of the 2015 Best of Manhattan Award in the Certified Public Accountants category and was awarded the 2014 SmartCEO New York Accounting Firm of the Year award. Richard is a Certified Public Accountant and a Chartered Global Management Accountant, with over 25 years of accounting, auditing, business advisory services, and tax experience. Richard’s recognitions include the Baruch College “Alumni Leadership Award for Business,” “Best Accountant” from The New York Enterprise Report, and The Network Journal’s “40 Under 40” award, as well as several awards from the National Association of Black Accountants. Richard’s writing has appeared in Dollars and Sense, Black Enterprise Magazine, Forbes, and Business Insider, among others, and he has spoken before the Black Enterprise Entrepreneurs Conference, the Entrepreneurs’ Organization (New York chapter) and the Learning Annex. Richard is a member of the American Institute of Certified Public Accountants (AICPA) Council and was one of the founding members of the AICPA National Commission for Diversity and Inclusion, and is co-chairperson of EO 2030, an initiative of the New York Chapter of the Entrepreneurs’ Organization, a dynamic, global network of more than 11,000 business owners in over 40 countries.

Patrick J. McGovern joined Gilead Sciences’ Government Affairs unit as a Director in September of 2010 and became a Senior Director in 2013. He is responsible for the development of FOCUS, a nation-wide initiative to promote the creation and dissemination of best practices to make routine HIV and HCV screening a standard of care within health care settings. Through over 200 partnerships, FOCUS has supported over 2.5 million HIV tests and 600,000 HCV tests. The FOCUS model has been broadly adopted as an efficacious and efficient approach to diagnosing blood borne viruses. Formerly the Chief Executive Officer of Harlem United Community AIDSCenter, Inc. and its affiliates from 1999-2010, Patrick has been a leader in the fight against HIV/AIDS for more than twenty years. Under Mr. McGovern’s leadership, Harlem United underwent dramatic financial, programmatic and management improvements. The agency’s combined FY 2009 operating revenue of $35 million represented a more than eightfold increase over the 1999 operating budget of $4 million. Patrick evolved Harlem United into a comprehensive service organization to meet the health care and housing needs of homeless persons living with or at risk forHIV.

Robin Roberts is co-anchor of ABC’s “Good Morning America.” Under her leadership, the broadcast has won four Emmy Awards for Outstanding Morning Program. In 2014, Roberts received the Walter Cronkite Award for Excellence in Journalism, was inducted into the Broadcasting & Cable Hall of Fame, and was named one of Glamour’s Women of the Year. She has appeared on the Hollywood Reporter’s New York Power List multiple times. She was voted the “Most Trusted Person on Television” by a Reader’s Digest poll in 2013. Roberts’ headline-making interviews include President Barack Obama on his support of marriage equality, Facebook founder Mark Zuckerberg, First Lady Michelle Obama, Amanda Knox, US women’s soccer star Hope Solo and NBA Superstar LeBron James. Roberts launched her production company, Rock’n Robin Productions in September 2014, which creates original broadcast and digital programming for ABC and other networks.

Roberts was diagnosed with breast cancer in June 2007. Five years later, she faced another health battle, when she was diagnosed with MDS or myelodysplastic syndrome, a disease of the blood and bone marrow once known as pre-leukemia. Her courageous, public battle has been recognized with awards and honors, including The Susan G. Komen Foundation, The Congressional Families Cancer Prevention Program, and Gilda’s Club. Roberts was also honored with a George Foster Peabody Award, Gracie Award and CINE Award for “Robin’s Journey,” reports on her MDS that inspired hundreds of potential bone marrow donors to register. Roberts was recognized with the Arthur Ashe Courage Award at the ESPY’s in July 2013 for the courage she displayed throughout her life and career. In 1983, Roberts graduated cum laude from Southeastern Louisiana University with a Bachelor of Arts degree in communications. She was a standout performer on the women’s basketball team, ending her career as one of the school’s all-time leading scorers (1,446 points) and rebounder (1,034). In 2012, Roberts was inducted into the Women’s Basketball Hall of Fame.

Leading sponsors for Sports Ball 2016 (list in formation) include American Express,BNY Mellon, BMW, Korn Ferry Intl., Maimonides Hospital, Northwell Health and SUNYDownstate Medical Center. Each guest will receive a pair of sneakers compliments of the Institute. The evening includes interactive games, dinner, dancing, entertainment, an awards ceremony, and a silent auction. Individual Sports Ball tickets are $1000 per person and tables are available for $10,000-$100,000.


From Broadway With Love: A Benefit Concert For Orlando

Jul 28, 2016 10:30 am

From Broadway With Love: A Benefit Concert for Orlando brought together some of Broadway’s biggest stars to support the GLBT Community Center of Central Florida, Hope and Help Center and Zebra Coalition.

Darren Criss Performs
Darren Criss Performs
Credit/Copyright: Ian Suarez, Dr. Phillips Center

The benefit concert, which sold out within two hours of tickets going on-sale, took place at Dr. Phillips Center for the Performing Arts.

The star-studded line-up included Darren Criss (Emmy-nominee, Broadway’s Hedwig and the Angry Inch, Glee), Chita Rivera (two-time Tony Award winner), Norbert Leo Butz (two-time Tony Award winner), Kelli O’Hara (Tony Award winner), Jessie Mueller(Tony Award winner, currently in Waitress), Brian Stokes Mitchell (Tony Award Winner, currently in Shuffle Along), Carmen Cusack (Bright Star), Andrea McArdle (original Annie), Lillias White (Tony Award winner), Liz Callaway (Miss Saigon), Josh Henry (Shuffle Along), Keala Settle (Waitress), Anika Larsen (recently seen in Beautiful: The Carole King Musical), Justin Sargent (Spiderman: Turn Off the Dark), Carrie Manolakos (Mamma Mia!), Lilla Crawford (Disney’s Into the Woods, Annie on Broadway), Wilson Cruz (My So-Called Life, Rent) and Priscilla Lopez (created Morales in A Chorus Line), as well as SiriusXM Broadway hosts Seth Rudetsky and Christine Pedi. Michael J. Moritz, Jr. (Tony Award Nominee) served as Music Director. The Orlando Philharmonic Orchestra accompanied the performers.

The two-and-a-half hour concert included rousing performances of “Sugar Daddy” from Hedwig and the Angry Inch, performed by Darren Criss; “Sun Is Gonna Shine” from Broadway’s Bright Star, performed by Carmen Cusack; Carole King’s “Beautiful,” performed by Jessie Mueller; “The Wizard and I” from Wicked, performed by Carrie Manolokas; “The Impossible Dream” from Man of La Mancha, performed by Brian Stokes Mitchell, “All That Jazz” from Chicago, performed by Chita Rivera, “Don’t Rain On My Parade,” performed by Lillias White; “Slide Some Oil to Me” from The Wiz, performed by Joshua Henry; and “”They Don’t Let You in the Opera If You’re a Country Star,” performed by Kelli O’Hara, just to name a few. The entire company united onstage for the final number, singing “What the World Needs Now is Love.”

Local performers included the Orlando Gay Chorus, singing “What a Wonderful World,” and dance troupe VarieTease, sharing a routine to Gershwin’s “Rhapsody in Blue.”

In addition to the concert, more than 50 online auction pieces, including autographed posters, playbills, and one-of-a-kind experiences – including sitting on-stage during Darren Criss’ number – were available to benefit the evening’s charitable partners.

The Orlando benefit concert was co-produced by Imagine Orlando, LLC (comprised of Tony Award winner Kenny Howard of Florida Theatrical Assoc., Joyce Arbucias of The Imagination House, Andrea Canny of PerformerStuff.com, Chris Yakubchik of Forster Boughman and Lefkowitz), Seth Rudetsky, James Wesley, Michael J. Moritz, Jr. and Broadway Records (Van Dean, Tony Award-winning/Grammy-nominated producer/co-conceiver of the first From Broadway With Love: A Benefit Concert for Sandy Hook).

From Broadway With Love: A Benefit Concert For Orlando was created by Seth Rudetsky, Kenny Howard and James Wesley; directed by Kenny Howard; written by Michael Wanzie with musical direction by Michael J. Moritz, Jr.

For more information, visit www.frombroadwaywithlove.org.


Bid On An Extremely Rare Celebration Apple-1 Computer

Jul 28, 2016 09:00 am

Steve Jobs: Profile

Here’s your chance to own the computer that sparked the revolution in home computing!

A new online auction is giving you the opportunity to bid on “Celebration” Apple-1, an original Apple-1 pre-NTI board that has many unique features, period correct power supply, original Apple-1 ACI cassette board (also populated with Robinson Nugent sockets), early Apple-1 BASIC cassettes, original marketing material, and the most complete documentation set of the known Apple-1 boards.

The “Celebration” Apple-1 is extremely rare not only because of the scarcity of Apple-1 computers, but according to Steve Wozniak, co-founder of Apple Computer, no knownPCB boards of this type were ever sold to the public. At this time, this is the only known Apple-1 to show the signs of starting out as a blank original-run board and not part of the two known production runs, so this board appears to be unique from all other known Apple-1 boards.

The “Celebration” Apple-1 was authenticated by Apple Expert and Historian, Corey Cohen. Mr. Cohen believes The “Celebration” Apple-1 has the potential to be “powered up” with minor restoration, but has recommended against it to maintain the board’s unique configuration.

The Apple-1 Computer is considered the origin of the personal computer revolution and was built in Steve Jobs’ parents’ home on Crist Drive in Los Altos, CA. 200 were hand-built by Steve Wozniak, but it is believed that less than 60 are still in existence.

The Apple-1 board is a not just a piece of history, but a piece of art.

Proceeds from the auction will go to the Leukemia & Lymphoma Society.

To find out more about this auction, click here.


Prince Of Wales Launches Prince’s Farm Resilience Programme

Jul 28, 2016 07:30 am

JLS: Profile

The Prince of Wales hosted a reception at his Highgrove home last week to launch The Prince’s Farm Resilience Programme.

The programme aims to provide business support and one-to-one guidance to 300 family farms each year across the UK, as well as giving them the tools to evaluate their viability and long-term sustainability.

“No-one can predict the long term effects of the continued volatility in farm-gate prices, the many other uncertainties in the sector, or for that matter the depth of the crisis that is looming over many farming families,” said Prince Charles in his speech. “However, we can be certain that the sector is going to have to respond and that farm businesses of all sizes will need to be more efficient and resilient and improve their productivity and competiveness, through diversification and added value enterprises. This is why, if I may say so, my Farm Resilience Programme is so vitally important and I can only pray that it will give as much hope and confidence as possible to farmers during these uncertain and difficult times.”

The Prince’s Farm Resilience Programme will be run by The Prince’s Countryside Fund, a charity set up by The Prince in 2010 to improve the prospects of family farms and the quality of rural life.

During the reception, His Royal Highness met Ambassadors of The Prince’s Countryside Fund, including former JLS band member JB Gill, who now runs his own farm in Kent.


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Valerie Milano is the well-connected Senior Editor and TV Critic at TheHollywoodTimes.Today, a showbiz/promotions aggregate mainly for insiders. She has written for Communications Daily, Hollywood Today, Television International, and Video Age International plus freelanced for others. Valerie donates and works closely with the Human Rights Campaign (Fed Club Council Member), GLSEN, Outfest, NCLR, LAMBDA Legal and the Desert Aids Project. She is a member of the Los Angeles Press Club. Milano loves meeting people and does so in her fave getaway Palm Springs as a member of the Palm Springs Museum of Art and the Old Las Palmas area community member. For years Valerie was a board member and one of the chief organizers for the Television Critics Association’s press tours. The tours take place twice a year in Beverly Hills/Pasadena.