Friday, August 28, 2015

Cristy Spooner joined me Monday at 9:00am pst to talk about a rare genetic disease that has affected his family and her foundation - The Spooner Foundation

Great show today with Cristy Spooner! If you missed our conversation, listen to the show here.

ABOUT THE SPOONER FAMILY
We are the Spooner family. Two of our daughters, Calyn & Ryann, live with Mitochondrial Complex I Deficiency, a rare genetic disease that affects their cerebellum. They have cognitive delays, struggle with motor control, and depend on adults for everything.

We love our beautiful girls with all of our being. We dream of a day when medical research can unlock the mysteries of this terrible disease, so that Calyn, Ryann, and other children like them can live happier, healthier lives.

Rick and Cristy Spooner lived for more than a decade with a devastating mystery. What was the rare genetic disease afflicting their daughter Calyn?

As a baby, Calyn suffered violent seizures, but neurologists didn’t know why. Unable to walk without the help of a walker, Calyn has grown up with significant motor, cognitive and emotional impairment. The Spooners could never get a diagnosis, except than an MRI showed a strange pattern on her cerebellum that doctors had never seen before.

When the couple’s third daughter, Ryann, began to exhibit similar symptoms shortly after her birth in 2009, it was a terrible deja vu.

Finally, 14 years after Calyn’s birth, advances in genetic testing gave the Spooners some answers. A new test called “exome sequencing” showed that Calyn and Ryann had inherited mutations from both parents on a gene known as NUBPL. That caused a defect in an important enzyme called complex I, which prevents their mitochondria — the power houses inside the body’s cells — from producing the energy their cells need to work properly.

Today, there is no specific drug for Mitochondrial Complex I Deficiency, the rare disease that affects Calyn and Ryann. Doctors treat the Spooner girls with a “cocktail” of vitamins and enzymes used as therapy for other mitochondrial diseases. It’s a treatment that has improved their daily lives, but is still far from a cure.

Rick and Cristy Spooner shared their story of a search for a diagnosis in a heart-felt documentary, “The life we live.” Since going public with their journey, they have become tireless advocates for medical research to unlock the mysteries of the NUBPL gene, which has implications not just for Complex I Deficiency but for Parkinson’s Disease as well.




Learn more at and watch documentary at : www.spoonergirls.com

Actor Bill Allen joined me at 9:30am pst Monday!

Thanks to special guest Bill Allen for calling in to today's show! If you missed our conversation, listen to the show here.

Thirty years ago, actor Bill Allen starred in a film called RAD – a coming of age story set against the backdrop of BMX racing. Although a failure at the box-office, the VHS release of the film turned it into one of the most successful rentals in history – and turned Bill, who played the main character of Cru Jones, into an underground superstar.

Now, Allen is back in the world of BMX-themed movies, co-starring as father to a young biker in the upcoming independent release Heroes of Dirt, being released in hundreds of theatres across the country in September and available on DVD and VOD on December 8. Allen is also working on a new film inspired by RAD where he’ll get to ride again as BMX hero.

There’s simply no limit to the way in which RAD and Cru Jones influenced an entire generation of extreme sports athletes and enthusiasts: there have been parodies of the film on American Dad and The Tonight Show, and Bill’s many fans include Comedy Central’s Daniel Tosh (who has welcomed “Cru” on episodes of Tosh.O). RAD director Hal Needham (Smokey and the Bandit) once told Allen that none of his films had the remarkable, lasting impact of RAD. Now there are fake Cru Jones twitter and facebook accounts, children (male and female) named “Cru,” and even a clothing boutique in Argentina named after Allen’s character.

But Bill Allen’s career also includes roles in films by Robert Altman and Oliver Stone, and co-stars in his early projects include future superstars just getting their feet wet like George Clooney, Miguel Ferrer, Brad Pitt, Brandon Lee, and Allen’s lifelong friend and fellow Texan Lou Diamond Phillips. Much to his wife’s chagrin, he continues to indulge in his hobbies as an amateur pilot and parachutist. On the ground, meanwhile, Allen is a veteran musician (he toured in a blues band with Phillips for several years), and recently produced a tribute CD for blues legend Bugs Henderson called “The King of Clubs”). He has remained active in his performing career, appearing in independent films and an episode of Breaking Bad.

With an appreciation for his unlikely career path and an excitement for the next phase of his career, Bill Allen is an eyewitness to Hollywood and cultural history – and a genuine cult hero ready to embrace a new generation of fans.

ABOUT BILL ALLEN

Biography

You wouldn’t have blamed a young Bill Allen if he had believed that the road to a thirty year career as an actor would be quick and easy. After all, his first few projects seemed to point towards early success. He earned his SAG card playing the lead in a movie where his supporting co-stars were Oscar winners, Hollywood legends, and two young unknowns named Miguel Ferrer and George Clooney; he had key roles in films by directors like Robert Altman and Oliver Stone; and he hung out with soon-to-be-famous actors like Lou Diamond Phillips, Brad Pitt, and Brandon Lee.

But Allen would ultimately find his career defined by a film that was barely seen when released and relegated by Hollywood to the VHS dustbin….where it became a classic and made Bill Allen a cult hero. Because Bill Allen, you see, is the guy played Cru Jones. THE Cru Jones.

 In case you weren’t a teenager obsessed with the growing sport of BMX (bicycle motocross) in the 1980s and early 1990s, it should be explained that Cru Jones was the hero of the film RAD, directed by the legendary Hal Needham (Smokey and the Bandit), a veteran widely regarded as the industry’s greatest creator of on-screen stunts. Though rather formulaic (and a bit laughable today for its distinctively 1980s styles), RAD featured elaborate and at the time revolutionary BMX stunts and riding performed by many of the pioneers of the movement at their prime. In the era before the X-Games and viral videos brought BMX to home screens, RAD showed young people all across the country how to execute (and not execute) moves that inspired a generation of extreme sport enthusiasts. Never mind that the film didn’t get a very wide release and poor reviews at the box-office: within a few years, RAD was one of the most-rented VHS films of all time. Teenagers who couldn’t afford to buy the film outright (this was in the days when VHS tapes sometimes retailed for $60 or more) rented it, watched it, and replayed it endlessly to study the stunts, as well as to revel in the underdog story of a bad kid made good by the sport of BMX.

“There are people who have named children Cru Jones,” says Allen with a laugh today, “boys and girls – I hear about one every week. There’s a porn star, and a boutique in Argentina named Cru Jones.” Now grown up, the kids who first rented RAD thirty years ago – like superfan Comedy Central host Daniel Tosh, who swore on the air that “Cru” has a place on his show as long as Tosh.O is on the air - have given Allen new moments in the spotlight, and allowed him to reflect on just what a strange journey a life in show business has afforded him.

 Allen doesn’t deny that some good fortune allowed him to escape a somewhat grim world of limited possibilities in suburban Dallas, where he grew up. Never particularly ambitious – and prevented from playing sports or doing anything dangerous because of his smaller size – Allen had a family friend with a lofty idea about making a film about a jockey. Suddenly Allen’s size and interest in acting found him as the film’s unlikely lead on set in Kentucky. The director convinced legendary stage and screen performer Jose Ferrer, along with many other veteran notables, to take parts in the film, which lead to Ferrer bringing along his own two sons and nephew Clooney to make their own screen debuts. The film was never completed, but it also introduced Allen to veteran film actor Adam Rourke (The Stunt Man with Peter O’Toole are among his many credits). Looking for a way to make a sober living after a rough life in Hollywood, Rourke returned to Dallas along with Allen and began a film acting class that ran successfully for several years. It is there that Allen landed a role in Robert Altman’s acclaimed Streamers, and met lifelong friend Lou Diamond Phillips as a fellow member of Rourke’s class.

Upon arriving in Los Angeles, Allen was, in his own words, “young, with an agent, a SAG card, and a look I could exploit,” and quickly found work on television in shows such as Hotel, Amazing Stories, and Family Ties, and in a key role with opposite Tom Cruise in Born on the Fourth of July. When Needham was casting RAD, a film to be co-produced by Talia Shire and co-starring recent Olympic gold medalist Bart Conner, he happened to catch an episode of Hill Street Blues that Allen guest starred in, and within a few days Allen was hired as the lead and off to Canada. Allen recently collected many of his stories, including many behind-the-scenes stories about the making and promotion of RAD, in his memoir, My RAD Life, where he explains the heady rush of making another major film, his disappointment in the film’s initial reception, and his eventual transition from hot new actor in town to a regular working professional.

A love for the stage led him to form a theatre company with friends Brandon Lee and writer/director John Lee Hancock (The Blind Side, Saving Mr. Banks), allowing him to not only refine his craft, but join a blues band for one aborted stage production. A longtime harmonica player and blues aficionado since childhood (Dallas was an is a hotbed of blues music, and Allen grew up idolizing locals like Stevie Ray Vaughn and T-Bone Walker), Allen’s band, the Pipefitters, toured nationally and performed several times on television, with old friend Lou Diamond Philips fronting the band. That love for music continues: recently Allen worked with his brother Sherman to produce and perform on a tribute CD (The King of Clubs) for longtime Texas bluesman Bugs Henderson.


RAD was in the rearview mirror for Allen, but came roaring back into view with the advent of social media. “I was blissfully unaware of what was going on with the movie,” remembers Allen, “because of my career in music, but something definitely was going on.” Because RAD has never been available on DVD (and VHS copies are increasingly rare), fans often arranged special screenings and invited Allen to attend. At one such screening, director Needham (who passed away in 2013), noted to Allen that of all the films he had ever made, RAD had the most remarkable and profound impact over time. That’s reflected in the film’s current rating on “Rotten Tomatoes.” Though saddled with a “0%” rating from the few critics who reviewed the film, it has an amazing “91%” from fans and “amateur” critics – the most profound discrepancy in the website’s database of over 10,000 films.


For the last several years, Allen has been content working on his music and making a life with his wife, Carol, as well as doing regular acting work (he was seen in an episode of Breaking Bad and has appeared twice on Tosh.O). But recently, he’s found great peace and good fortune in embracing the role that was almost forgotten in a film that refuses to be. “I own the batsuit, and they can’t take it away from me,” he jokes. He plays a key role in a new BMX-themed film Heroes of Dirt, directed by one of the RAD generation, Eric Bugbee. Released in US theatres in the fall, it will make it to DVD and VOD on December 8.

Allen, Bugbee and the Heroes of Dirt production team are also deep into developing a new film inspired by RAD. That’s going to mean getting back on the bike – he’s busy studying both motorcycle and BMX with longtime pro Martin Aparijo (one of the stunt bikers featured in the original RAD), determined to do more of his own stunts this time around. He’s also developing a traveling BMX / 80s Rock live performance tour, combining nostalgia and extreme biking for a whole new generation of fans. Not bad for the kid who wasn’t allowed to ride a bike – but now counts airplane piloting and power-parachuting among his hobbies. On or off his bike, there’s no question that Allen is always going to find someone who wants to meet the real Cru Jones – and he’s happy to give the people what they want.

http://www.billallenrad.net/
myradcareer.com 
http://www.heroesofdirt.com/

Friday, August 7, 2015

New York Times bestselling author Ashley Rhodes-Courter joined me Mondayat 9:30am!

If you missed today's show with Ashley, listen to our conversation here.


Ashley Rhodes-Courter is the quintessential American success story. Born in 1985 to a single teen mother, by the age of 3 she was in Florida’s foster care system where she spent almost ten years being shuttled between 14 homes—some quite abusive—before being adopted from a Children’s Home at the age of twelve.

Despite her ordeal, she excelled in school because she believed that, “my education was the one thing nobody could take from me.” Early in her life she felt compelled to advocate for herself and the other children she lived with, particularly in the abusive foster homes.

Her efforts and academic achievements landed her Eckerd College’s Trustee Scholarship—the school’s most prestigious full-tuition award. She graduated with honors and ahead of schedule earning a double major in Communications and Theater and a double minor in Political Science and Psychology. Ashley then went on to earn a Master’s Degree in Social Work from the University of Southern California.

During her undergraduate studies, she was one of 20 college students selected for the USA Today All-USA Academic Team and was named one of GLAMOUR Magazine’s Top Ten College Women. She was also selected as one of the four Golden BR!CK Award winners for outstanding advocacy for community change by DoSomething!. As part of their campaign, she was featured on 25 million bags of Cool Ranch Doritos.

In the sequel to the New York Times bestselling memoir Three Little Words, Ashley Rhodes-Courter expands on life beyond the foster care system, the joys and heartbreak with a family she’s created, and her efforts to make peace with her past.


See video from Ashley's previous book tour to see how eloquent and engaging this amazing advocate for children is:
https://www.youtube.com/watch?v=IXplKvQQ2RU

https://www.youtube.com/watch?v=-I6c0WGwZbs

Ashley Rhodes-Courter spent a harrowing nine years of her life in fourteen different foster homes. Her memoir, Three Little Words, captivated audiences everywhere and went on to become a New York Times bestseller. Now, with THREE MORE WORDS, Ashley reveals the nuances of life after foster care: College and its assorted hijinks, including meeting “the one.” Marriage, which began with a beautiful wedding on a boat that was almost hijacked (literally) by some biological family members. Having kids—from fostering children and the heartbreak of watching them return to destructive environments, to the miraculous joy of blending biological and adopted offspring.


Whether she’s overcoming self-image issues, responding to calls for her to run for Senate, or dealing with continuing drama from her biological family, Ashley Rhodes-Courter never fails to impress or inspire with her authentic voice and uplifting message.


Ashley Rhodes-Courter has been featured in Teen People, The New York Times, USA TODAY, and Glamour, as well as on Good Morning America. Her first memoir, Three Little Words, began as an essay, which won a writing contest for high school students, and was published in The New York Times Magazine. A graduate of Eckerd College and a champion for the reformation of the foster care system, Ashley speaks internationally on foster care and adoption. Visit her at Rhodes-Courter.com.

Coming up 3/13 at 9:00am - Armita Jamshidi, Founder of Aunt Flo’s Kitchen, a company Run By Women, For Women. She is also a student at Cornell University, where she studies Women’s Health and Computer Science, as she builds Aunt Flo’s Kitchen.

Armita Jamshidi, Founder of Aunt Flo’s Kitchen,  a company Run By Women, For Women. LISTEN Today's show featuring  Armita Jamshidi  Aunt...