Originally posted on Jaguars.com

That made this the easiest of decisions for Blake Bortles.

Bortles, the Jaguars’ third-year quarterback, on Thursday morning announced that his foundation – the Blake Bortles Foundation – has donated $10,000 to the City of Orlando’s OneOrlando Fund. That announcement came as the Jaguars also announced an initiative to raise money for the fund.

OneOrlando has been established as a way to respond to the needs of Orlando in the wake of the Pulse tragedy early Sunday morning.

“I can’t even imagine what those people and their families and their friends are going through,” Bortles said.

Bortles was born in Altamonte Springs, and grew up in Oviedo. He attended the University of Central Florida and retains close ties to the Orlando area.

“It’s unbelievable,” Bortles said. “There is always stuff like this that goes on around the world and in our country. It’s one of those things you never think will happen in your home, especially in Orlando because it’s such a place that’s viewed as a fun, happy city that people come from all over the world to visit.

“It was one of those things where you never thought it would happen to you, but it did and it’s tragic and unbelievably unfortunate and sad.”

Bortles said the situation and his Orlando ties made this a perfect fit for the foundation’s mission.

“Part of our mission statement is first responders,” Bortles said. “There is a lot of money being raised for the families of victims and there are a lot of people trying to get involved. There are also a lot of people behind the scenes who are trying to clean this thing up and make it right – those people being firefighters and policemen.

“That was sort of an easy thing, to say ‘Let’s give money to help these people out so they can help the situation out and hopefully make this as easy as possible for some of these families.’’’

The Jaguars on Friday announced they are engaging with their fans to raise money for a donation that will be given to OneOrlando. Over the next week, the Jaguars Foundation – the team’s charitable arm – will collect donations online through jaguars.com/jaxfororlando/.

Fans can donate any amount; those who donate at least $25 can receive a custom “Orlando United” cap. The collection period will end on Friday, June 24.

“In response to the senseless acts of violence, the Jaguars Foundation is encouraging our fans to support our friends and neighbors in Central Florida by donating money to the OneOrlando Fund via the Jaguars’ #JAXFORORLANDO initiative,” Jaguars Foundation president Peter Racine said.

Bortles announced the foundation’s donation commitment at a press conference with Racine and Jacksonville mayor Lenny Curry, who announced that the City of Jacksonville is launching a Dear Orlando postcard campaign to provide Jacksonville residents with the opportunity to express their thoughts and sentiments to members of the Orlando community.

The postcards will be available at public library locations throughout the city of Jacksonville starting next week. Citizens can pick up and return postcards to one of the city’s 21 library locations. The campaign will run through July 30, the International Day of Friendship, when the cards will be sent to the City of Orlando.

“My heart – and the hearts of our entire community – go out to the city of Orlando,” Curry. “I applaud Blake and the Jaguars for their leadership and support of efforts to help the community heal. I encourage Jacksonville citizens to join us in sharing hope with our Florida neighbors.”

Jaguars fans and Jacksonville residents interested in donating should visit jaguars.com/jaxfororlando/ and share their support on social media using the hashtag #JAXFORORLANDO.

Originally posted on KMTV Omaha Sports Insider

Click here to watch the video aired on KMTV

NBA player Luol Deng is bringing the South Sudanese community together this weekend through South Sudan Unite.

Deng, a native of South Sudan, launched the annual event last year in Washington, D.C. through his foundation.

This year, he is hosting it in Omaha, which has the largest South Sudanese population in the U.S.

The annual event is three days long, and part of that gathering will feature a leadership workshop for young people. In a YouTube video, he explained he wants to bring refugees and migrants together.

Thursday morning, young South Sudanese adults filled a large room inside Kaneko where they say they are invisible despite working and going to school in the metro.

Ater Mayen, 26, and his family moved to the U.S. when he was six years old. They moved several times around the country before arriving to Omaha, shocked to see the state of their people’s community.

The Sudanese population in this town hasn’t given themselves the best representation, Mayen says.

Amal Hamdan, 26, attributes the negative perception to run-ins with the law and high crimes.

“We had a gang problem at one time, but it’s kind of lessening out overtime,” Hamdan says.

Both college students say they have been lumped into that same category, when Mayen is studying computer science and Hamdan is in her third year of medical school.

They – along with their peers – say other positive examples of South Sudanese in America exists.

Like Miami Heat’s Loul Deng.

“For me, this is a guy that I’ve looked up to personally,” says Koang Dulony, a local activist.

“It gives us a chance to really see what’s possible and what success could mean.”

As the group of young adults wait for Deng to arrive, they say they hope the workshop will give them guidance where there is none since they are considered the first generation in their new homeland.

“A lot of times, we see our youth here struggling and we don’t know where to go or how to kind of progress through this culture,” Hamdan says. “I think it’s kind of critical when all of us can come together.”

Originally published on People.com April 2016

When producer Gordon Gray and his wife Kristen’s two young daughters were diagnosed with a rare and deadly brain disease in March 2015, the couple knew they needed a miracle.

Thanks to the support of thousands – including stars likeJennifer Garner, Dwayne ‘The Rock’ Johnson and Anne Hathaway – they may have found one.

One year after their daughters’ received the devastating diagnosis of Batten disease – a genetic degenerative brain disorder for which there is no cure – the Los Angeles, California, couple’s 5-year-old daughter Charlotte became the first patient in the world to enroll in a clinical trial for an experimental therapy that could save her life – and the lives of many others.

“We’re incredibly hopeful and optimistic for Charlotte, but we know this is something we’re going to continue to fight forever,” Gordon, 51, tells PEOPLE. “We’re in the middle of it. We want to help all the kids with Batten.”

The deadly brain disorder that affects both Charlotte and the couple’s 2-year-old daughter Gwenyth is caused by a mutated gene that disrupts the brain’s ability to dispose of waste. The build-up of waste damages brain cells, causing blindness, seizures, the loss of communication and motor skills and dementia. Children with the Grays’ particular form of Batten disease, CLN6, often die between the ages of 6 and 12.

When doctors came to this diagnosis, they told the Grays there was nothing that could be done to save their girls. “One of the doctors we spoke with said, ‘I would recommend that you live in a single-story house and prepare for wheelchairs and blindness,’ ” Gordon told PEOPLE last June.

It was a recommendation the producer, known for inspirational sports movies like The Rookie and Miracle, refused to accept.

Parents Fund Breakthrough Therapy That May Treat Daughters' Fatal Brain Disorder: 'We Were Told to Take Them Home and Watch Them Die'| Health, Medical Conditions, Real People Stories, Anne Hathaway, Dwayne Johnson, Dwayne ''The Rock'' Johnson, Gwyneth Paltrow, Jennifer Garner

Gwenyth and Charlotte Gray last year

TRISH ALISON PHOTOGRAPHY

“We were told to just take them home and watch them die,” Gordon says. “That was something that we just couldn’t do.”

Instead, the couple sprang into action, launching the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease and enlisting an incredible network of celebrities from Rihanna to Gwyneth Paltrow to help them reach their goal of raising $10 million to cure the deadly disease.

“We’ve received endless support from our communities,” says Kristen, 40. “With their help, we found the means to get this therapy started – not just for our children, but for other children, too.”

One year later, the foundation has raised an estimated $3.5 million to fund research for a cure. The funding helped establish a clinical trial for an investigative gene therapy at Nationwide Children’s Hospital. The investigative treatment replaces Batten sufferer’s mutated gene by delivering a new gene that is carried to the brain by a virus that is not harmful to humans.

“The most direct way to correct a genetic disease is to restore what is missing and that is precisely what we have done in the work with the first patient with this devastating disease enrolled in the trial,” explains Dr. Jerry R. Mendell, a lead investigator in the clinical trial.

Charlotte underwent the one-time procedure in March, and, while it’s too soon to make any official statements about the experimental therapy’s success, her parents believe she is showing improvement.

Parents Fund Breakthrough Therapy That May Treat Daughters' Fatal Brain Disorder: 'We Were Told to Take Them Home and Watch Them Die'| Health, Medical Conditions, Real People Stories, Anne Hathaway, Dwayne Johnson, Dwayne ''The Rock'' Johnson, Gwyneth Paltrow, Jennifer Garner

Charlotte Gray undergoing gene therapy

COURTESY THE GRAY FAMILY

“From the second she was treated, we saw a glimmer in her eye,” says Kristen. “She was more engaged and connected and you could just tell that there was something there that had changed.”

Earlier this year, the Grays watched helplessly as their daughter began having difficulty walking and struggled to recall certain words.

Now, thanks to speech and occupational therapy, Charlotte seems to have already begun regaining what was lost. “She’s gradually starting to reconnect with her language skills,” says Gordon.

Last Friday, Gwenyth – who has not started to show any symptoms of the disease yet – became the second patient to enroll in the clinical trial and a third child with Batten CLN6 will enroll by June. The Grays are hoping to raise an additional $1 million to reach even more children.

“We want to continue to help other kids with Batten,” Gordon says. “We ‘re looking to raise one million dollars to honor the commitment that we made to help every child that is available for the clinical trial.”

Parents Fund Breakthrough Therapy That May Treat Daughters' Fatal Brain Disorder: 'We Were Told to Take Them Home and Watch Them Die'| Health, Medical Conditions, Real People Stories, Anne Hathaway, Dwayne Johnson, Dwayne ''The Rock'' Johnson, Gwyneth Paltrow, Jennifer Garner

Gordon Gray sits with Charlotte Gray in the hospital

COURTESY THE GRAY FAMILY

Gordon says he and his wife remain hopeful that this therapy will halt the progression of their daughters’ disease and clear a pathway for treatment for other forms of Batten. But, because the therapy is so new, there’s no test to tell them the therapy has worked – they’ll simply have to wait and see.

“We spend every day looking for signs that it’s working,” Gordon says. “We probably torture the doctors because we have so many questions they can’t answer because this hasn’t been done before.”

For now, all the couple can do is watch their daughters and wait for signs that Charlotte is getting better and that Gwenyth continues to be symptomless.

“From the diagnosis to today feels like one long day,” Gordon says. “I’m grateful we were able to get our girls through the clinical trial in a short time, but it was still too long because this disease never rests.”

“Until I know with certainty that we’ve arrested the progression of this disease and can help other families, I won’t rest either.”

Originally published on Billboard.com March 15th 2016

It’s been a blessing not just for the kids, but for all of us,” 5H’s Normani Kordei says after talking with King/Drew Magnet School students.

Despite Fifth Harmony‘s hectic schedule and continuing success on the charts — including current top 20 Billboard Hot 100 hit “Work from Home” featuring Ty Dolla $ign — the group’s five young singers still make time to give back.

On Monday, Fifth Harmony came to Compton, California’s King/Drew Magnet School for a mentoring session sponsored by Urban Fitness 911, a Los Angles philanthropic organization addressing issues of disparity in health, fitness and academic skills among teens in low-income communities (the program was born out of a West Hollywood SoulCycle class, but that’s another story… ).

“The whole program is about opportunity and showing these kids that they can be something, they can do something,” says Veronica Everett-Boyce, the founder, executive director and driving force behind the non-profit program. “People expect kids to know that and they don’t.”

Urban_Fitness_in_Compton_650

Fifth Harmony with King Drew High School students enrolled in the Urban Fitness 911 program in Compton, CA. (Courtesy)

5H’s Ally Brooke, Normani Kordei, Dinah Jane, Camila Cabello and Lauren Jauregui sat informally on the edge of the high school auditorium’s stage before some 70 teenagers who eagerly asked a variety of questions about their rise to stardom and its many trappings. The pop sensations’ candid and inspiring answers included stories of personal struggle, triumph and ultimately growth eliciting tears from both band and high schoolers alike.

“At 6 years old, my mom and I made the decision to completely start over,” said Camila Cabello, 19, who  immigrated to the United States because of hardships her family faced in Cuba and Mexico. Cabello spoke of these challenges that included leaving her father behind in Mexico, having only the “clothes on [her] back” and setting off to a foreign land where she knew nothing of its language or culture. The singer encouraged the rapt students before her to “not be defined by circumstances” and to “fight ruthlessly for your passions and dreams.”

Bandmate Lauren Jauregui, 19, discussed a personal tragedy in her family. “Last year, on the same day that our first album dropped, my grandmother passed away,” explained a tearful Jauregui. Though she had a packed schedule of performances and promotion and the “industry telling [her] this is the priority,” she knew instinctively the right place for her was at home with her family.

5H’s Ally Brooke, 22, echoed a similar sentiment as she recalled losing her grandfather while both caring for her ailing mother and competing on X Factor, the show that brought Fifth Harmony together. “Your loved ones and family are a priority always,” she said.

The Urban Fitness students were clearly inspired by the girl group’s messages. “We saw another side to celebrities we don’t typically see,” said Matthew Whitaker, 17, a King Drew senior. “They shared experiences and life lessons with us that opened us up to another viewpoint we don’t see very often. They showed us that they’re people too.”

Jasmine, Williams, 18, concurred. “Rather than hearing about someone on Instagram, Facebook, Twitter or on TV, they were here, live, giving their answers directly to us live. It made me think, ‘Wow, I can be just like them.’ It inspired everybody sitting in the crowd to believe that they can do anything.”

Whitaker and Williams are among 11 students from Urban Fitness taking a UCLA music business class taught by Dina LaPolt, an entertainment attorney who also volunteers for Urban Fitness. LaPolt, who works with Fifth Harmony, not only brought 5H to the class, but has recruited other clients to speak at the high school, including Deadmau5 and Tommy Lee and Sofi — all of whom left the mentoring session inspired but perhaps not as blown away as Fifth Harmony.

“This has been one of the most touching experiences for all of us,” said 5H’s Normani Kordei. “It’s been a blessing not just for the kids, but for all of us. I think that we are going to leave here ten times happier ourselves because we got to share our stories and got to inspire people through what we love to do, and this is what it’s about.”

All of which brings us to Fifth Harmony’s new album 7/27, slated for May 20. “7/27 was the date we formed on X Factor,” explains Cabello, “so it’s sort of like a rebirth for us.”

“It’s sonically similar to Reflection,” adds Jauregui, “but we’re touching upon more life subjects and the things that we’ve gone through.” If those stories have the same impact they did on the King Drew students, the album should be a blockbuster.

Originally published on ESPN.com

JACKSONVILLE, Fla. — Jacksonville Jaguars quarterback Blake Bortles spent his first NFL offseason trying to fix some mechanical and fundamental flaws in his game.

He’s spending part of his second trying to make a difference off the field.

Bortles on Monday announced the formation of the Blake Bortles Foundation and a charity golf tournament and concerts to raise money for adults and children with learning disabilities as well as first responders in emergencies. The event will take place at the Renaissance Resort at the World Golf Village April 15-16.

“You become a professional athlete and it’s a given that you’re supposed to start a foundation or a charity of some sort,” Bortles said. “There was never a doubt that I was going to do it but it was like, ‘Let’s take time, find what we’re interested in and what we’re passionate about, and let’s do it the right way and actually make a difference and hopefully have some positive impact.”

It is the concerts that set Bortles’ golf tournament, which will be Saturday, April 16 at King & Bear, apart from other charity golf tournaments in the area. Country music artists Jon Pardi, whose single “Up All Night” reached No. 10 on Billboard’s Hot Country Songs chart in 2013, Ira Dean and Buck Bradshaw will perform on Friday, April 15.

Following the golf tournament, country music artists Kane Brown, Joe Bachman & the Tailgaters, Preston Pohl, and others are scheduled to perform.

“We want to raise as much money as possible and have a blast doing it,” Bortles said.

Originally aired on October 12, 2015

See the full story here

Family Stricken with Rare Brain Disease

Meet a family whose two young daughters were born with a very rare brain disorder called Batten disease. Learn the signs and symptoms of the devastating and incurable disease.

New parents Gordon and Kristen Gray were overjoyed by every coo, every smile, and every milestone reached by their cheerful young daughter, Charlotte.

When Charlotte was around 3 years old, however, her parents began to notice her speech and fine motor development were not progressing as quickly as they were before. She was no longer able to keep up with her peers at school. Thorough testing revealed that Charlotte had a very rare, neurodegenerative disorder called Batten disease. The couple was devastated when a doctor explained that Charlotte would become blind, immobile and progressively impaired cognitively, and likely would be dead before the age of 13.

Since the disease is inherited, the couple was told their younger daughter, Gwenyth, had a one-in-four chance of having Batten, as well. They immediately had her tested and were crushed to learn that she, too, shared the incurable diagnosis.

Dr. Jill Weimer, associate director and scientist at the Children’s Health Research Center, explains that Batten disease affects approximately one in 100,000 individuals worldwide. The rare, fatal disorder causes progressive damage to the cells of the nervous system, resulting in vision loss, seizures, and loss of motor functions.

There is no cure for Batten disease. Researchers currently are working to understand the underlying causes of genetic diseases, such as Batten, and are searching for cures.

 

Originally published on Huffington Post 

Veronica Everett-Boyce founded Urban Fitness 911 three years ago in Los Angeles, CA. Urban Fitness 911 addresses the disparity of health and fitness for youth and adults by providing them with wellness, fitness, nutrition, mentoring, and tutoring. Urban Fitness 911 has three initiatives: High School Urban Fitness, Common Ground and the Toni Kohn House.

Michaela Haas: Why did you start Urban Fitness 911?
Veronica Everett-Boyce: I started Urban Fitness 911 because I believe no matter what your situation, every person deserves a chance to have success. I would know because I grew up on welfare, could not read until I was in the 10th grade, was not raised by mom, and my father killed himself. Now, I’m in a PhD program. If I can do it, so can they.

What’s the link between physical and emotional fitness?
I don’t think you can have one without the other. I think that when you take care of your body, you take care of your mind, and vice versa. What is the point of being successful if you do not have good health? I think they feed into each other. It is not thinking about it as separate entities, but as a whole. Everything is important: mind, body, and soul.

For my book Bouncing Forward: Transforming Bad Breaks into Breakthroughs, I interviewed Dr. Maya Angelou about overcoming childhood traumas and violence, and she said, “Nobody ever does it alone.” Every child or teenager needs at least one person in their life who believes in them unconditionally. Do you share that experience?

Absolutely. I totally believe in the “it takes a village” concept, in that it takes consistency, structure, courage, support, and love to begin the process of mending a wounded heart.

I believe that we give up on kids too early and easily. Child development psychologist Ann Masten at the University of Minnesota told me, “It really bothers me that when people hear about the evidence on trauma, child abuse, and in utero exposure to alcohol, they assume, ‘Oh, I must be totally damaged.’ People pick up this idea, but there are many opportunities for reprogramming in the course of life.” When I did the research for Bouncing Forward, I learned that many troubled kids opened up to opportunities later in life, such as continuing education. Is this what you are trying to offer with Urban Fitness 911?
I agree with that, but I also believe that kids can open up to opportunities before that as well if they are given the attention, love and support that they need. I am going after the kids who are headed toward falling through the cracks. I am going after kids that are homeless, abused, have poor academic performance, are lost in the system due to foster care and have not been shown the roadmap to success.

Who are the girls you invite to live at the Toni Kohn house? Tell us a little about them.

They are seven, amazing fighters who are smart, passionate, and interested in giving back to their communities. Also, these girls have had major challenges to overcome. They are scholars that have come from homelessness, abuse, foster care, instability, and adversity who are working every day to change their story.

How can people help? What do the girls need the most?

In addition to your time and donations, what the girls really need is exposure to people and opportunities that they may never otherwise have had the chance to experience.

From CBS 2 Krem.com


SPOKANE, Wash. — Gonzaga Prep representatives said they plan to honor Steve Gleason at Friday’s football game.

The game will launch 34 Challenge, a fundraiser for the G-Prep scholarship and for Team Gleason. Steve Gleason began the foundation to improve the lives of people with neuro-muscular diseases like ALS.

Sports director Darnay Tripp recaps all the exciting action from tonight’s ‘Kraziness in the Kennel.’

Gleason was a former G-Prep student and a member of the school’s football team. He wore the number 34, inspiring the fundraiser’s name and goal. School officials said they hope to raise $34,000.

The school has also ordered 340 foam helmets for students to wear during the game as a tribute to Gleason.

From G-Prep, Gleason went on to play for WSU and for the New Orleans Saints. He was diagnosed with ALS in 2011.

NOLA.com October 4th 2015

Despite overcast skies, Gleason Gras Festival and Race 2015 was up and running Saturday (Oct. 3), when runners kicked off the festival with a race along Bayou St. John. 

Gleason Gras, now in its fifth year, was hosted by What You Give Will Grow inspired by Thomas Morstead, Team Gleason, and Steve Gleason.  Gleason Gras was also at a new location: At Team Gleason House at St. Margaret’s in Mid-City, where a crowd of all ages filled the area to enjoy interactive activities, food, and music from Paul Varisco and the Milestones, Tysson, Flow Tribe, Big Sam’s Funky Nation, with a finale by Better Than Ezra (who were in town to play two other benefit shows: Sean Payton’s Play It Forward Black & Gold Gala, and their own Tailgate Party). The 610 Stompers also showed off their smooth moves.

While a silent auction raised even more money, it was the live auction – in the VIP tent and outside – where New Orleans Saints quarterback Drew Brees, joined at various times by Fox Sports 1 analyst (and former Saints player) Scott Fujita, Team Gleason’s Blair Casey, and restaurateur Greg Reggio, inspired the audience to bid high and often on jerseys, helmets, (even Brees’ football uniform pants), footballs, and a guitar autographed by Brees, Gleason, Fujita, Morstead, even former Saints coach Jim Mora, who attended. Other items included a dinner at Borgne restaurant; a chance to practice kicking with Morstead; a tour of the Saints facility, to which Reggio added additional VIP festival passes if the bidding reached $2,000 (It did); and the on-site painting Frenchy was creating.

The family of Ivan Miestchovich, a business professor at University of New Orleans, came onstage to thank Team Gleason and Brees for their efforts: Because Miestchovich had ALS, and his home in Ponchatoula home needed a continuous power source in case the electricity went out, Team Gleason purchased a generator. Team Gleason’s Casey was leading the fundraising efforts for a van for the family when Miestchovich died Sept. 26.

In addition to raising awareness about ALS, (amyothrophic lateral sclerosis, a neurological disease), Gleason Gras raises funds for research for developing technology to help those with ALS, as well as finding a cure.

Houston Chronicle September 29th

Arian Foster on charity event raising $125,000: ‘Great night for philanthropy’

Texans Pro Bowl running back Arian Foster, his teammates and more than 150 Houstonians attended a charity event at Morton’s the Steakhouse at the Galleria Monday night that raised $125,000 for his charitable foundation.

The Arian Foster Family Foundation supports families and youth in underprivileged neighborhoods, devoted to improving access to healthy food and increasing financial education and opportunities for personal development.

Foster and his teammates, including linebackers Brian Cushing and Jadeveon Clowney, offensive linemen Duane Brown, Ben Jones and Derek Newton, punter Shane Lechler, wide receivers DeAndre Hopkins, Nate Washington and Cecil Shorts III, cornerbacks Johnathan Joseph, Kareem Jackson and Kevin Johnson and running backs Alfred Blue and Jonathan Grimes donned aprons and worked as celebrity servers. Foster’s family, including his parents, Bernadette Sizemore and Carl Foster, and his brother, Abdul, also attended the event.

“Great night for philanthropy, great night to be alive,” Foster said. “How many people’s lives are better because how you live is the true measure of one’s success. It’s in that relentless pursuit of helping others that we each get closer to the person we were truly born to be!”