Rare Disease Day

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. It was established in 2008 because, according to European Organisation for Rare Diseases (EURORDIS), treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families. In 2009 Rare Disease Day went global as National Organization for Rare Disorders (NORD) mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day. leading rare disease patient advocacy organizations including the Global Genes Project have joined forces to promote Rare Disease Day.

The first Rare Disease Day was held on 29 February 2008 in numerous European nations and in Canada through the Canadian Organization for Rare Disorders, organized by EURORDIS. The date was chosen because February 29 is a “rare day,” and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States.bIndividuals observing Rare Disease Day took part in walks and press conferences to raise public awareness of rare diseases, organized fundraisers, and wrote en masse to government representatives; health-related non-profit organizations across numerous countries also held events, gatherings, and campaigns. The day also included an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases. The days leading up to Rare Disease Day included other policy-related events in numerous locations, such as a reception in the British Parliament where policymakers met with individuals with rare diseases to discuss issues such as “equal access and availability of prevention, diagnosis, treatment and rehabilitation.”

In 2009 Rare Disease Day was observed for the first time in Panama, Colombia, Argentina, Australia, the People’s Republic of China, and the United States.In the United States, NORD signed on to coordinate Rare Disease Day on February 28 and collaborated with media partner The Discovery Channel and program partner Mystery Diagnosis,bas well about 180 other partners, to organize activities across the country for the observance of Rare Disease Day.vSeveral United States state governments issued proclamations regarding Rare Disease Day. In Europe, over 600 patient advocacy and support organizations, again coordinated by EURORDIS, also planned events. The theme for Rare Disease Day 2010 was “Patients and Researchers: Partners for Life”. The event saw the participation of a total of 46 countries participated in 2010. Newcomers from Eastern Europe were Latvia, Lithuania Slovenia and Georgia. 3 African countries joined the event as well. The Theme for Rare Disease Day 2011 was “Rare Diseases and Health Inequalities”, to focus on differences for rare disease patients between and within countries, and compared to other segments of society, in order to ensure equal access for patients to health care, social services and rights, and to orphan drugs and treatments.

Rare Disease Day 2012 was the fifth to be observed and since 2012 was a leap year, this was the second time the day falls on the originally intended date (February 29, a Wednesday). Each year, the global planning committee, under the leadership of EURORDIS and with NORD as the US representative, selects a theme to be used around the world. For 2012, the theme was “Solidarity” and the slogan was “Rare But Strong Together”. Other members of the global planning committee include representatives from the national rare disease alliances in several European countries. Thousands of patient advocacy organizations also got involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day.

The theme for 2017 is research. With many events taking place around the globe, the tagline of this year’s campaign is “with research, possibilities are limitless” – drawing attention to the fact that more research is urgently needed to help patients.

Cindy Wilson (B-52’s)

Cindy Wilson, American singer-songwriter with the B52s was born 28 February 1957. B-52s were formed in Athens, Georgia in 1976. The original line-up consisted of Fred Schneider(vocals, percussion, keyboards), Kate Pierson (organ, bass, vocals), Cindy Wilson(vocals, bongos, tambourine, guitar), Ricky Wilson (guitars), and Keith Strickland(drums, guitars, synthesizers, various instruments) and cowbell player, poet and vocalist Fred Schneider played an impromptu musical jam session after sharing a tropical Flaming Volcano drink at a local Athens Chinese restaurant. Other ideas they had to name their band were the “Tina-Trons” and “Felini’s Children”. When they first jammed, Strickland played guitar and Wilson played congas. They later played their first concert (with Wilson playing guitar) in 1977 at a Valentine’s Day party for their friends.

The band’s name comes from a particular beehive hairdo resembling the nose cone of the aircraft of the same name. Keith Strickland suggested the name after a dream he had had one night, of a band performing in a hotel lounge. In the dream he heard someone whisper in his ear that the name of the band was “the B-52s.” The band’s quirky take on the new wave sound of their era was a combination of dance and surf music set apart from their contemporaries by the unusual guitar tunings used by Ricky Wilson and thrift-store chic. Their first single, “Rock Lobster”, recorded in 1978, was an underground success, which led to the B-52’s performing at CBGB and Max’s Kansas City in New York City. A rerecorded version of Rock Lobster was released as a single. In the UK and Germany it was backed with Running Around (Instrumental), which appeared on their second album Wild Planet. The buzz created by the record in the UK meant their first show in London at the Electric Ballroom, London, was packed in anticipation, with many UK pop stars such as Sandie Shaw, Green Gartside from Scritti Politti, Joe Jackson, and others in attendance. In Canada, released on the Warner Bros. label, the single went from cult hit to bona fide smash, eventually going on to reach the No. 1 position in the RPM-compiled national chart on May 24, 1980.

In 1979 The B-52’s signed contracts with Warner Bros. Records for North America, South America, Australia, and New Zealand; and with Island Records for the UK, Europe, and Asia. Chris Blackwell, founder of Island, produced their debut studio album. Recorded at Blackwell’s Compass Point Studios in The Bahamas, and released on July 6, 1979, The B-52’s contained re-recorded versions of “Rock Lobster” and “52 Girls”, six originals recorded solely for the album, and a remake of the Petula Clark single “Downtown”. According to the band interview on the DVD With the Wild Crowd! Live in Athens, GA, the band was surprised by Blackwell’s recording methods; he wanted to keep the sound as close as possible to their actual live sound so used almost no overdubs or additional effects. The album was a major success for the band, especially in Australia where it reached number three on the charts alongside its three singles “Planet Claire”, “Rock Lobster”, and “Dance This Mess Around”. In the United States, the single “Rock Lobster” reached the Billboard Hot 100 chart, while the album itself was certified platinum by the Recording Industry Association of America.

The follow-up, Wild Planet, reached number eighteen on the Billboard 200 chart in 1980 and was certified gold. “Private Idaho” became their second Hot 100 entry. On January 26, 1980, The B-52’s performed on Saturday Night Live. They also performed at the Heatwave festival (billed as the “New Wave Woodstock”) in Toronto, Canada in August 1980; and appeared in the Paul Simon film One Trick Pony. Their third release was a remix of tracks from their first two studio albums. Party Mix! took six tracks from the first two LPs and presented them in extended forms. John Lennon cited “Rock Lobster” as an inspiration for his comeback. In 1981 the band collaborated with musician David Byrne to produce a third full-length studio album. Due to alleged conflicts with Byrne over the album’s musical direction recording sessions for the album were aborted, prompting the band to release Mesopotamia (1982) as an extended play (EP), in 1991, Party Mix! and Mesopotamia, the latter of which had been remixed, were combined and released together on a single compact disc. In 1983 the band released their fourth album Whammy!; this album brought the band into synthesizer and drum machine experimentation. The album entered the Billboard 200 chart in 1983, reaching number twenty-nine during the year. “Legal Tender” reached the Billboard Hot 100 chart, as well as the Billboard Hot Dance Club Play Singles chart alongside “Whammy Kiss” and “Song for a Future Generation”. After initial pressings of Whammy! were released, copyright issues with Yoko Ono led to the song “Don’t Worry” being removed and replaced on future pressings by “Moon 83″, a remixed version of the track “There’s a Moon in the Sky (Called the Moon)” from their debut album.

The B-52’s regrouped in 1985 to record Bouncing off the Satellites, their fifth studio record, and in January of that year they performed in Brazil, at Rock in Rio; their largest crowd ever. During the recording, guitarist Wilson announced he had been suffering from AIDS/HIV-related health complications. None of the other band members were aware of his illness. In an interview, fellow band member Kate Pierson stated that Wilson had kept his illness secret from his fellow band members because he “did not want anyone to worry about him or fuss about him.” On October 12, 1985 Wilson died from the illness, at the age of 32. With Cindy Wilson devastated by her brother’s death, and her bandmates too being depressed about Ricky’s passing, the band went into seclusion and did not tour to promote their album nor the group, prompting a hiatus from their musical careers. In 1987 they released a public service announcement in the style of The Beatles’ Sgt Pepper’s Lonely Hearts Club Band album cover on behalf of AMFAR (The Foundation for AIDS Research).

Following Ricky Wilson’s death in 1985 Strickland switched full-time to guitar. The band subsequently added various musicians for their live shows. This included Sara Lee or Tracy Wormworth on (bass),Zachary Alford or Sterling Campbell on (drums, percussion) and Pat Irwin or Paul Gordon (keyboards & guitars).Rooted in new wave and 1960s rock and roll, the group later covered many genresranging from post-punk to pop rock. The “guy vs. gals” vocals of Schneider, Pierson, and Wilson, sometimes used in call and response style (“Strobe Light,” “Private Idaho”, and “Good Stuff”), are a trademark. Presenting themselves as a positive, fun, enthusiastic, slightly oddball and goofy party band, the B-52’s tell tall tales, glorify wild youth and celebrate sexy romance.

Brian Jones (the Rolling Stones)

sg-rsThe late, great Brian Jones, former member of the rock group The Rolling Stones was born 28th February 1942. The Rolling Stone were formed in London in 1962 When Keith Richards and Mick Jagger who were childhood friends and classmates, discovered that they shared a common intereest in the music of Chuck Berry and Muddy Waters. leading to the formation of a band with Dick Taylor (later of Pretty Things). Richards, Taylor, and Jagger found Brian Jones as he sat in playing slide guitar with Alexis Korner’s R&B band, Blues Incorporated,which also had two other future members of the Rolling Stones: Ian Stewart and Charlie Watts On 12 July 1962 the band played their first gig at the Marquee Club billed as “The Rollin’ Stones”.

lib-rsThe line-up was Jagger, Richards and Jones, along with Stewart on piano, and Mick Taylor on bass. Bassist Bill Wyman joined in December 1962 and drummer Charlie Watts the following January 1963 to form the band’s long-standing rhythm section. Their first single, was a cover of Chuck Berry’s “Come On” and their second single, was “I Wanna Be Your Man”, Their third single, Buddy Holly’s “Not Fade Away”. The band’s second UK LP – The Rolling Stones No. 2, yielded the singles “The Last Time”, “(I Can’t Get No) Satisfaction” and “Get Off of My Cloud”. The third album “Aftermath” was released in 1966, contained the singles “Paint It Black”, the ballad “Lady Jane” “Have You Seen Your Mother, Baby, Standing In The Shadow?” “Goin’ Home” and “Under My Thumb”. 1967 saw the release of “Between the Buttons”, which included the double A-side single “Let’s Spend the Night Together” and “Ruby Tuesday”, and the release of the Satanic Majesties Request LP. the next album, Beggars Banquet was an eclectic mix of country and blues-inspired tunes,featuring the singles “Street Fighting Man” “Jumpin’ Jack Flash” and “Sympathy for the Devil. The Stones next album Let It Bleed featured the song “Gimmie Shelter”, “You Can’t Always Get What You Want” “Midnight Rambler” and “Love in Vain”. The next album Sticky Finger was released in 1971.and featured an elaborate cover design by Andy Warhol, and contains the hits, “Brown Sugar”, and “Wild Horses”.

album-Rolling-Stones-Exile-On-Main-StreetThe Rolling Stones classic double album, Exile on Main St. was released in May 1972. their follow-up album Goats Head Soup, featured the hit “Angie”. Their next album was 1974′s It’s Only Rock ‘n’ Roll. Some Girls, which included the hit single “Miss You”, the country ballad “Far Away Eyes”, “Beast of Burden”, and “Shattered”. The band released their next albums Emotional Rescue and Tattoo You in 1980 which featured the single “Start Me Up”. in 1982 the Rolling Stones toured Europe to commemorate their 20th anniversary and released their next album Undercover in late 1983. In 1986′s the album Dirty Work was released,which contained the song “Harlem Shuffle”.The next album “Steel Wheels” included the singles “Mixed Emotions”, “Rock and a Hard Place”, “Almost Hear You Sigh” and “Continental Drift”. their next studio album 1994′s Voodoo Lounge,went double platinum in the US. and went on to win the 1995 Grammy Award for Best Rock Album.The Rolling Stones ended the 1990s with the album Bridges to Babylon which was released in 1997

GrrsIn 2002, the band released Forty Licks, a greatest hits double album, to mark their forty years as a band and ten years later In 2012 The Rolling Stones released the album Grrrr to celebrate their 50th anniversary featuring two new tracks and also made a documentary called Crossfire Hurricane. The Rolling Stones are one of the of the most commercially successful and critically acclaimed acts in the history of popular music and In early 1989, the Rolling Stones, including Mick Taylor, Ronnie Wood and Ian Stewart (posthumously), were inducted into the American Rock and Roll Hall of Fame. Q magazine also named them one of the “50 Bands To See Before You Die”, and popular consensus has accorded them the title of the “World’s Greatest Rock and Roll Band.” Rolling Stone magazine ranked them 4th on their “100 Greatest Artists of All Time” list.