UPDATED DECEMBER 6, 2015-JENNIFER MCNARY-DUCHENNE'S MUSCULAR DYSTROPHY-MOTHER OF MAX AND AUSTIN

                                     UPDATED DECEMBER 6, 2015

They call themselves the “fierce moms:” women who formed an alliance out of desperation and need. All have children with Duchenne muscular dystrophy, a rare and fatal disease. And for nearly four years they have single-mindedly lobbied politicians and federal regulators to speed up approval of experimental medicines.

“I don’t think we’ve seen anything like this since the days of AIDS and HIV activism,” said Ira Loss, who tracks the pharmaceutical industry for Washington Analysis, a consulting firm.

The fierce moms and other parents have notched some key victories: A Food and Drug Administration panel of experts will hold a pair of widely anticipated meetings to review two drugs designed to the slow the muscle wasting associated with DMD. The first occurs next Tuesday when a treatment from BioMarin Pharmaceutical will be considered. The other takes place in January to examine a drug developed by Sarepta Therapeutics.

But their victories have also raised uncomfortable questions.

Patients suffering from an array of rare conditions are now putting huge pressure on the FDA, hoping to shape deliberations about the risks and benefits of new medicines. That worries some experts who fear that emotional pleas from patients — or their mothers — could compromise scientific judgment.

KAYANA SZYMCZAK FOR STAT

Austin Leclaire, 16, makes his way through his apartment complex to the dog park, in Pembroke, Mass.

“The days of a controlled, experts-only system are fast ending,” said Daniel Sarewitz, a professor of science and society at Arizona State University. “On the whole, this is not a bad thing. But one can imagine things might get rushed through the regulatory process without adequate time to see all of the risks.”

Parents whose children have DMD, however, will tell you that there is no time to waste.

A DEVASTATING DISEASE

DMD is caused by an error in a gene that produces a protein called dystrophin. The gene is found on the X chromosome, so the disease primarily affects boys — up to one in every 3,500 inherit the mutation, causing about 20,000 new cases each year worldwide.

Without dystrophin, muscle fibers degenerate and are gradually replaced by fat and connective tissue until voluntary movement becomes impossible. By their teens, boys with DMD are usually confined to wheelchairs. Later, they are unable to breathe independently, and their life expectancy generally doesn’t run past 25.

The disease has no cure, and there are no drugs available to even slow the loss of muscle strength. For decades, there was little focus on drug development, as pharmaceutical companies focused primarily on chasing blockbusters for treating common ailments, such as diabetes, while ignoring rare disorders. But that all changed thanks to a confluence of recent events.

Notably, scientific advances recently identified ways to thwart the progression of DMD. The drugs up for review — drisapersen from BioMarin and eteplirsen from Sarepta — both rely on a technique known as exon skipping. The treatments coax the cell’s internal machinery to skip over sections of faulty genetic code. This in turn helps create a partially functional dystrophin protein. The goal is to create enough dystrophin so boys can regain mobility, or at least to slow the pace of their decline. (These two drugs, however, target only one of many coding segments of the dystrophin gene, and thus may help just the 13 percent of the DMD patient population who have mutations in this region).

But perhaps the biggest boost to drug development for DMD came on the regulatory front, when in 2012 President Obama signed into law the Food and Drug Administration Safety and Innovation Act. This allowed the FDA to accelerate approval when a drug satisfies an unmet medical need for a serious condition, and it empowered agency officials to rely on surrogate markers to green-light these kinds of drugs, rather than requiring evidence of actual clinical improvement. For Duchenne, a proxy could be increased dystrophin production.

“By doing that, Congress opened the door for patient involvement,” said Pat Furlong, chief executive of Parent Project Muscular Dystrophy, the largest DMD-focused nonprofit organization in the United States.

Founded in 1994, the PPMD more closely resembles a well-oiled advocacy machine than a grassroots collective. Thanks to its fundraising prowess, the organization has doled out grants totaling more than $45 million for DMD research to scientists and physicians. And its $6 million annual budget allows it to hire lobbyists and policy experts to woo lawmakers.

So it was not surprising that Furlong and her organization capably jumped through the door opened by Congress. With help from a bevy of scientific experts and industry representatives, PPMD crafted a set of guidelines in 2014 for developing drugs for DMD. The FDA even used the group’s regulatory guidance — the first-ever from a rare-disease patient organization — as a blueprint for its own draft recommendations, which were published this past June.

“We’ve met with numerous groups representing many different diseases, but they did something unique,” said Dr. Janet Woodcock, the FDA official who oversees drug approvals. “They were able to bring a whole community together.”

Still, even patient advocacy couldn’t always overcome the realities of drug development.

NO CAKEWALK

Consider eteplirsen, the drug being evaluated by the FDA in January. In 2011, the drug’s sponsor, Sarepta Therapeutics of Cambridge, Mass., was running out of money, and the company gambled it all on a very small study of just 12 young boys with DMD. The hope was that the boys given eteplirsen would show improvement in a six-minute walking test, a standard measure of physical function. Positive results could then be used to seek FDA approval and to raise funds for further drug development.

Jenn McNary, a “fierce mom” with two teenage boys with DMD, enrolled her younger son, Max, in the Sarepta trial. His mobility had been declining. Within a year of starting treatment, he was running with other children. During a recent afternoon in the family’s home on the south shore of Boston, Max, now 13, darted about the living room as he searched for a game to play.

KAYANA SZYMCZAK FOR STAT

Max Leclaire, 13, relaxes at home in his apartment.

After Max visibly improved, McNary also wanted to give the drug to her older son, Austin, but he hadn’t qualified for the same study because he was no longer ambulatory, which meant he couldn’t take a walking test. McNary figured her best chance of getting the drug for Austin, now 16, was to push the FDA to accept the 12-person trial as valid evidence for an accelerated approval.

“Austin was declining at a typical rate,” said McNary, who now works for the Jett Foundation, a nonprofit devoted to DMD awareness and research. “Meanwhile, I’m watching his brother get better on this drug and I just felt utterly hopeless.”

McNary teamed up with Sarepta officials, who announced in 2012 that the drug displayed two benefits in the 12-person trial. The first was that boys given eteplirsen for about a year could travel, on average, 220 feet further during the six-minute walking test than other boys who were given a placebo for 5.5 months before being switched to the Sarepta drug.

The other benefit, according to the published study data, was that eteplirsen increased the amount of muscle fibers containing the dystrophin protein by about 50 percent after a year of treatment. Sarepta has always argued this change in the surrogate marker should be seen as a welcome sign that its treatment can eventually restore mobility, although it has yet to prove this link.

But convincing the FDA to accept this data, or even the walking test results from such a small study, as grounds for market approval is easier said than done. “Any time you’re the first with FDA to see how it interprets legislation, they get nervous,” said Chris Garabedian, who led Sarepta until earlier this year. “We knew this would be a challenge.”

Initially, the FDA encouraged Sarepta to submit its limited trial data for review. But in late 2013, a bomb dropped: A 186-person trial that was testing drisapersen, the competing drug then being developed by Prosensa Therapeutics and its partner GlaxoSmithKline, failed. The drug did not produce a meaningful difference in a six-minute walking test compared with boys who were on a placebo for close to a year.

Listen to the Signal podcast: For boys with Duchenne, and two drug companies, a moment of shared hope

Glaxo ended its partnership with Prosensa, which was left to fund further development on its own. And FDA officials reversed course and told Sarepta its small trial was insufficient for regulatory submission. The chain of events was a one-two punch to families affected by DMD. Suddenly, two promising drugs held less potential.

“It makes me feel kind of mad,” said Austin Leclaire, McNary’s son, as he sat in his wheelchair and held one of his dogs in his lap. Austin eventually managed to get eteplirsen in a safety trial started last year for boys with advanced-stage DMD, but the frustration his family experienced at the time is still palpable. “The reason the FDA is there is to help people and to make sure they’re safe. But they got in the way.”

THE $840 MILLION GAMBLE

For months, the mood in the DMD patient community was grim. But in November 2014, BioMarin, a drug company in California that specializes in rare diseases, bought Prosensa for $680 million upfront, with the possibility of an additional $160 million if drisapersen gains approval.

Clearly, this was a gambit. But after Glaxo walked away, Prosensa mined its study data and found its drug appeared to be effective in younger patients if given over a longer period of time. BioMarin, drisapersen’s new owner, believed it could convince the FDA to review the drug on the basis of this subgroup analysis. (The company declined to comment for this story).

By then, the FDA was more willing to consider formal reviews for both DMD drugs. Agency officials recognized an opportunity to use a platform technology — in this case, exon skipping — to develop a new category of drugs. And patient groups had made their mark by pulling heartstrings, lobbying aggressively, and working with the agency on ways to advance drug development.

“There’s been an evolution in the four years I’ve been working on this,” said Ed Kaye, who had been chief medical officer at Sarepta and succeeded Garabedian as interim CEO in April of this year. “You had what was a fairly conservative FDA going head on with a very aggressive and liberal patient group. But there’s been a tempering on both sides. Patient voices were heard and patients learned about the regulatory view.”

KAYANA SZYMCZAK FOR STAT

Jenn McNary and her children look through a box of toys in their apartment. Austin and Max have Duchenne muscular dystrophy, Norah and James do not.

Neither eteplirsen or drisapersen is a shoe-in for approval, though. “Given the disease and the pressure FDA is under, they want to do a panel and show the world there is transparency,” said Simos Simeonidis, an analyst at RBC Capital Markets. “But this is not a slam dunk one way or the other.”

A key to agency thinking is likely to emerge in briefing documents that will be released prior to the BioMarin panel meeting next week. And a wild card in the approval process may turn out to be the patient groups.

Many parents are planning to attend the meetings next week and in January. Some are concerned that the FDA may eventually approve one drug but not the other. This could prove problematic for some families, because each drug maker is already studying other experimental agents that target different exons. If an FDA panel favors one medicine over another, parents fear this would cause setbacks for entire pipelines. So a very vocal outpouring is expected.

Patient groups are well-aware that the FDA is susceptible to patient outcries. In August, for instance, the agency approved Addyi, a drug to combat female sexual dysfunction, despite side effect issues and limited effectiveness. The approval followed sustained public pressure on the FDA. So the sight of youngsters with limited life spans in wheelchairs may tip agency officials and advisers toward approval.

At least that is what the parent groups are hoping.

“Ultimately, we want approval for all drugs,” McNary said. “I don’t just represent my kids. There are other kids waiting for one drug or the other.”_______________________________________________________________

I I I Received the following email below 

today from Jennifer Mcnary (See Below). 

I wrote a ( CLICK HERE TO READ) 

previous story on this Blog dated

January 5, 2013 that told of her battle 

on behalf of her two sons. 

Some potentially positive events 

have subsequently taken place and 

Jennifer as explained in her e-mail. 

I wish her children all of the best in 

receiving the life sustaining care 

that they deserve.

Only one of my sons had access to a  life-changing drug while his brother  with the same disease got sicker.  Now the drug could have FDA approval  as soon as next year!

Jerry -- I wrote to you last December telling you about my two sons who were both born with life-threatening Duchenne's Muscular Dystrophy. But only one of my sons, Max, had access to an experimental treatment that was drastically improving his life while his brother Austin got sicker.  I could not be happier to  announce that just last week  the drug company decided to  file for approval of the "miracle drug" Eteplirsen  after promising talks with  the FDA!  This means that the drug  could be available as soon  as next year, and both my sons  will soon have a chance at living  a better and longer life. The petition you signed helped the drug garner unprecedented attention from the FDA. I thought I would have to wait for years for both of my sons to have access to this life-changing drugand stand by helplessly as one of my sons thrived while the other suffered silently. But thanks to you, all children  with Duchenne's will be more likely  to have access to this breakthrough treatment  as early as next year. Austin wants supporters like you to know that our work isn't done yet and that he'll be happy when he is sitting down at the doctor's office to receive his first treatment. Max hopes that his brother Austin will soon be stronger like he is.  I'll be keeping up the positive  pressureon the FDA knowing  that I have over 180,000 people  standing behind me.  Thank you so much for your help, this couldn't have happened without you.  Jennifer McNary Saxtons River, Vermont

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SATURDAY, JANUARY 5, 2013

HELP SIGN PETITION FOR JENNIFER MCNARY MOTHER OF MAX AND AUSTIN

I received an e-mail below from Jennifer McNary Mother of Max and Austin. Please take a minute of your time and sign her worthy petition to the FDA. These are the "small" things that each of us can do to make a difference in the lives of others who need our help, in this case a simple signature in their support to keep her kids alive.

SIGN Jennifer's Petition by clicking on this sentence. 

Both of my sons have the same debilitating disease  -- Duchenne Muscular Dystrophy -- that's kept them dependent on wheelchairs to get around.But now only one of my sons has access to a "miracle drug" that is saving his life.

Max was fortunate enough to take part in a study of a breakthrough medication, and now he can walk on his own for longer than he ever could. But Austin wasn't as lucky. 

Without access to this miracle drug, I watch Austin suffer silently as his brother thrives. The FDA has the power to make this drug available to kids like Austin by putting it through the "accelerated approval" program. It could otherwise take years for this important drug to be available to kids like Austin, denying him the same chance as his brother at a better and longer life.

I started a petition on Change.org asking the FDA to accelerate the approval of Eteplirsen, Max's miracle drug, so both of my sons can have a chance at stopping the crippling effects of Duchenne Muscular Dystrophy. Please sign my petition here.

Duchenne's is a disease that causes loss of muscle, to the point where children stop walking and eventually cannot breathe on their own. It is a slow death sentence with no effective treatment available. Watching Max make progress with this medication has been nothing short of a miracle, but bittersweet -- Austin grows steadily weaker with each passing day. 

Eteplirsen has helped one of my sons accomplish what I never believed possible. And this year, a law was passed that allows the Food and Drug Administration (FDA) to expedite the approval of experimental medications that have been proven to work.

The company that produces Eteplirsen is going to officially ask the FDA soon for accelerated approval because of its miraculous trial results. I am doing everything I can to make sure the FDA knows how crucial this drug is to the survival of my sons. But they need to know that the public supports an accelerated approval process too -- and since they have the power to act, your signature will add the pressure they need to move quickly.

Click here to sign my petition asking the Food and Drug Administration to place Eteplirsen, a miracle medication for children with Duchenne Muscular Dystrophy, on accelerated approval so that my son Austin and other children who need this life-changing drug can have access to it.

Thank you for your help.

Jennifer McNary
Mother of Max and Austin
Saxtons River, Vermont

THE VICTIMS OF SAN BERNARDINO WERE HUMAN BEINGS, NOT JUST MORE NAMES

          

These are the names and stories of the 14 people, innocent victims murdered at the Inland Regional Center in the San Bernardino mass shooting on Dec. 2, 2015. They lived across Southern California, from Los Angeles and Orange counties, in the Inland Empire and the San Bernardino Mountains that tower over the valley where the shooting occurred.

Many of you won't even have the attention span to make it to the bottom of this list because it's too long, and/or you are "busy", too tired to read more names of victims, or just plain lazy, it's part of your coping reality that you have become immune, numb to the constant mass murders, daily depraved individual killings, of other human beings.

Despite your own words of disgust and "shock' as each new mass murders event takes place, it is only a media event to you, where you have forgotten that these are real human beings that are being slaughtered.

Be honest and admit to yourself that all this horrific violence happening so often does disturb you, but it has also programmed your mind to "accept" that the human life of a stranger no longer truly means anything to you. 

Society has accepted, become "used" to innocent victims, even scores of little children school children being murdered, then it is the ugly truth that cannot be hidden.

I doubt that given the current condition of the "average" morons who comprise most of our selfish, self centered, cruel world, that most people will ever crawl out from their bubbles and change our world for the better.

So for those of you who can't read about the truth, do your phony Face Book posts, your Twitter hash tags, or just ignore all of this. After all, these are strangers, it can't happen to you or your loved ones, right?

Soon their names will be erased from the public mind and who they were will be forgotten by most everyone, except their families and close friends.

Senseless Tragedies such as these are now all too common, it is the "new normal", but those whose lives are suddenly stolen from them by evil, are often not afforded the dignity to be recognized that they lived, had lives, dreams, hopes, and they are gone forever.

 In memory of these 14 dead human beings and instead of focusing on the killers, politics, intellectual concepts, I write about these individual victims, a little about who they were, and those grief stricken loved one they leave behind, whose lives have been irreversibly scarred forever.

These slaughtered victims were a father of six, a free-spirit who befriended strangers in the grocery store checkout line, a mother of three who fled religious persecution in Iran, a woman who was 8 when she and her mother left Vietnam for a better life. 

The youngest of the victims was 26. The oldest was 60.

                                 Michael Wetzel, 37

Michael Raymond Wetzel, 37, worked as the supervising environmental health specialist for San Bernardino County, his LinkedIn page says. 

Wetzel leaves behind six children. Friends created a YouCaring crowdfunding page in order to help his family.

Around Lake Arrowhead, Mike Wetzel was a frequent sight, running errands with his six children in tow, three from his first marriage and three from his second.

He loved babies, said family friend Arlene Arenas, 40, and could soothe a colicky infant when no one else could.

His first year coaching local AYSO soccer, he led a team of five-year-old girls just learning the sport. Their team had a princess theme.

"He was super tall, and the littlest of girls thought he was a giant," said Arenas, whose daughter played on the team. "He had no qualms about letting them follow him around, or walking around like a monster, with the little ones shrieking and hanging off his legs."

Wetzel graduated from Rim of the World High School in Twin Peaks, Calif., in 1996.

Last summer, Arenas said she watched Wetzel and his wife, Renee, hold their baby and dance at a summer concert in Lake Arrowhead Village.

"We took those small moments for granted, " she said.

In a post on Facebook on Wednesday, his wife had asked for prayers. "My husband was in the meeting where the shooting happened, " she wrote. "I have not been able to get in touch with him. Please please pray that he is OK."

Friends of the Wetzel family have set up a YouCaring account to help them in this time of need. You can donate here: www.youcaring.com/renee-wetzel.

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• L. Daniel Kaufman, 42
• 
• L. Daniel Kaufman, 42, was from Rialto, California. He ran the coffee shop inside the building in which the shooting took place.
• He considered himself a free spirit. He loved horror movies. He often held up the grocery store checkout line because he talked to everyone he met.
• He refused to get a driver's license, saying he didn't want to give up the daily rides to and from work from his boyfriend of nearly three years, Ryan Reyes. Reyes was the one who dropped him off Wednesday at his job running the coffee shop in Building 3 at the Inland Regional Center, training the developmentally disabled clients who worked there.
   After false information that he had been wounded, Reyes and Kaufman's loved ones waited 22 hours for word. Authorities needed a description to compare to the dead bodies still at the facility.
  Just under 6 feet tall and around 195 pounds, Reyes said. Black dress shoes with square toes. Khakis. A black polo shirt ,the uniform for Coffee N More. No tattoos. Lots of rings and necklaces and one earring on each side, rainbow bars for gay pride.
•                                             Damian Meins, 58

• Damian Meins of San Pedro, California, had only been working for San Bernardino County for a short period of time. Previously, he was a physical education teacher at St. Catherine's School in Riverside, according to a Facebook post from a former student. 
  

  Meins never strayed far from his church or its teachings, said Walter Hackett, who met Meins some 40 years ago in high school.

  "Service to others, helping others. He very much took that to heart," Hackett said.

  Hackett called his friend "a good, good guy."

  "Funny and smart and tall. A real quick smile, very friendly and outgoing," he said. "It's a real hard hit for all of us who knew him."

  Meins married his high school sweetheart, now a Catholic school principal, and they raised two daughters, one a teacher. Meins was fondly remembered as the guy who dressed up as Santa for school pictures, according to a parent's social media posting Thursday.

  Meins' Facebook page, where he can be seen smiling with his family in front of the Golden Gate Bridge in San Francisco, says he studied business administration at the University of Redlands starting in 1991. In 1979, he graduated from UC Riverside. He was also retired from the Riverside County after working there for 28 years.

  In addition to working in the public health department in San Bernardino, Meins was an extended care coordinator at St. Catherine of Alexandria School in Riverside, where he also helped kids create Christmas art projects and religious murals, Hackett said.
• Meins was a "bright light" that has been "extinguished from our world in a most tragic way," said an email to employees from the Riverside County Transportation & Land Management Agency, reported in the Los Angeles Times.
• You can donate here: https://www.gofundme.com/damianmeinsfamily
•                                 Sierra Clayborn, 27
• 

  
  
  Sierra Clayborn was an environmental health specialist for the county. People magazine reported she’d been with the county for almost two years.

  
  

  Sierra Clayborn, a 2010 graduate of UC Riverside, worked as an environmental health specialist for San Bernardino County.

  "I love hanging out with my friends and I love my blooming career in public and environmental health," she wrote on her Facebook page, where her profile photo still has the red, white and blue filter honoring victims of last month's terrorist attack in Paris. "I am dedicated to enjoying my new life, that God so graciously gave me, so I thank Him… and live life to the fullest. I love my life."

  "I love you more than you ever knew," her sister Tamishia wrote Thursday morning in a Facebook post. "You were taken too soon. My heart is broken. I am completely devastated."

  She was energetic, thoughtful and always smiling, said Mary Hale, manager of the Fontana apartment complex where Clayborn had lived for a year and a half.

  "When I think of Sierra, only one word comes to mind: She was a lady," Hale said. "That's not a word I use lightly. She was a super, super lady."

  Hale told The Times that Clayborn had frequently said how much she loved her job. "She was dedicated to her profession, and she loved the opportunities to meet different people," Hale said.

  Clayborn shared an apartment with a boyfriend, Hale said.
•             You can donate here: https://www.gofundme.com/sierraclaybornmem
•                                   Bennetta Betbadal, 46
  
  
  Benneta graduated from Cal Poly, Pomona with a degree in Chemestry. She accepted a position as an inspector for the San Bernardino County Health Department where she has served for many years. Benneta was proud to work for the people of San Bernardino County. She loved her job, her community, and her country. Her greatest love, however, was for her husband, her children, and her large extended family. 
• Benneta Betbadal was born in Iran in 1969. She fled to America at the age of 18 to escape Islamic extremism and the persecution of Christians that followed the Iranian Revolution. Benneta initially settled in New York City, eventually moving to California and marrying her husband, Arlen Verdehyou, a police officer. They moved to Rialto, California and had three children, now ages 10, 12, and 15. 
   
• It is the ultimate irony that her life would be stolen from her that day by what appears to be the same type of extremism that she fled so many years ago.
• “She loved her job, her community and her country. Her greatest love, however, was for her husband, her children and her large extended family," the GoFundMe page for her family says.
• A GoFundMe account has been set up to help Bet-Badal's children in this difficult time. You can donate here: www.gofundme 
•                                                    Isaac Amanios, 60
  
                          
• As an environmental health inspector of the San Bernardino County Health Department, Amanios was at an office holiday party in the Inland Regional Center in San Bernardino, where the shooting took place.
  

  Those that knew Amanios stressed the importance he tied to family. Evelyn Santiago-Blanks, a family friend and the real estate agent that sold Amanios his first home after arriving to the San Bernardino area, spoke of his love for his children and wife: "Isaac was absolutely dedicated to his wife and family. He was truly the ultimate family man! It is a devastating loss for them."

  The Los Angeles Times reported that he was married and had three adult children
•                                      Aurora Godoy, 26
• 
                             Aurora Godoy, 26, of San Jacinto, was a married mother of an infant son.
• Aurora Godoy had a wide smile and an open heart, and at the age of 26, the life she had planned for herself was falling into place.
• She and her husband, James Godoy, had met in 2003 during a Junior ROTC class at Carson High School, her husband said.                                                                                                                                                                                                                                                           They dated for about eight years before eloping in 2012. They bought a home in San Jacinto. She gave birth to their son, Alexander, who will turn 2 in January.
• Speaking by telephone as his son fussed in the background, James Godoy praised his late wife as a devoted mother.
  "It was all about him," James Godoy said of his son.
  They did not plan on having more children, he added: "Oh no, one was enough."
  Over the years, Aurora Godoy had attended various colleges and a culinary school, and she was a few credits shy of completing her associate degree.
  For about three years, she worked for the San Bernardino County elections office.
  Since January, she worked as an office assistant in the county's Department of Public Health.
  Calls have since flooded in and co-workers have set up a fundraising page. But he said he had not yet processed what happened or how to move forward. 
  "Disbelief is the word," he said. "Disbelief."
  .No funeral arrangements have been made.
                                                                                                                                                                      Aurora Godoy's friend Katrina Kenney set up a GoFundMe account to help her family in this time of need. You can donate here: www.gofundme.com/3wd9j
•                                    Yvette Velasco, 27
• 

  One of Robert and Marie Velasco's four daughters, the 27-year-old was "full of life and loved by all who knew her," according to a statement issued by her family.
  

  
  

  Yvette's sudden death has stunned her loved ones.
• "We are devastated about what happened," the family statement said, "and are still processing this nightmare."
• To her family, Yvette Velasco embodied intelligence and ambition.
• Since 2014, the Fontana native had worked as an environmental health specialist for the San Bernardino County Department of Public Health, according to public records.
• Stephen Porter, a priest at St. Catherine of Sierra Catholic Church in Rialto, said in a Facebook post that Yvette Velasco was a parishioner at the place of worship.
  Porter asked for prayers for all the victims, "but especially for +Yvette Velasco (27)."
  "May she rest in peace," Porter wrote.
• • You can donate here:https://www.gofundme.com/yvettevelasco
  •                                       Shannon Johnson, 45

  • 

    
    

    Shannon Johnson’s studio apartment is a museum to his life.

    In the kitchen, portraits of relatives hang over a small, round table.

    Johnson had several of the images tattooed on his body: His first wife, his grand-daddies, his father, who died in a grain silo accident in Georgia when Johnson was a small boy.

    He wanted Pifer to be his next tattoo. They had recently decided to get married and planned to tell their families this month.

    In the bathroom, a framed collage of business cards hangs over the toilet, mostly from truck stops across the country.

    Johnson drove 18-wheelers for about a decade with the CB handle Shannondoah before he gave up life on the road to finished college and settle down. Around 2005, he started working for the Public Health Department in San Bernardino County.

    "He loved the department because he said it was like working in the United Nations," Pifer said.

    Pifer, a psychotherapist and longtime member of Mayor Eric Garcetti's crisis response team, met Johnson online about three years ago. Six months later, she moved into the apartment across the hall.

    He awoke each morning to read the news online and get his caffeine fix. He took his coffee with sugar and creamer. He had to be out the door by 4:45 a.m. to make it to work. He would text Pifer from the train.

    "Have a great day. I love you," he wrote Wednesday morning in their last communication.

    Sitting in Johnson's kitchen, she struggled to recall details. "My memory is damaged right now," she said.

    A GoFundMe page called the Shannon Johnson Memorial has been created to assist the family and friends with burial costs.                                                                                                                                                             Wednesday morning, it was Johnson who played the role of hero when he helped shield one of his co-workers during the San Bernardino shooting at a social services center.

    Through Facebook, Stephanie Rose Baldwin, whose sister was wounded but survived, conveyed her appreciation for the man she called an angel.

    “This angel of a man was sitting next to my sister (Denise Peraza) when the shooting happened.” Baldwin said. “He helped protect her from the bullets and we are so grateful for his heroic love, that most likely saved her life. She said he was a very sweet man and she spoke with him often at work. Our heart breaks hearing of his passing, and it bursts knowing of his love for my sister.
                                                                                                              ---------------------------------------------------------------------------------                               Robert Adams, 40

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      An environmental health specialist with San Bernardino County, Robert Adams often inspected pools and food facilities during the construction phase.

      
      
      

      Adams, 40, and his wife grew up in the Inland Empire and were high school sweethearts, said family friend Jenni Kosse. They had tried to have kids for some time, she said, and he adored their 20-month-old daughter, Savannah. He loved taking her to the park and uploaded new pictures of her to Facebook almost every night.

      "When you saw the three of them together," said a distressed Kosse, "you just wanted to jump in the middle and think, 'I want to have fun too.'"

      He always looked out for others. He could sense when someone was angry or frustrated, she said. He'd smile at them and ask, "How can I help you?" Almost always, Kosse said, the person's anger would melt away.

      Adams  who wore bright ties and his beard in a goatee also spent time helping his parents, who donate doves to Inland Empire families who have lost a loved one, Kosse said. They give them away for free, she said, so families can release them at ceremonies.

      "To be supportive," she said, her voice quivering. By Thursday night, a fundraising page set up by friends, who said they were struggling to "make sense of what makes NO sense," had raised more than $20,000 for the widow and young daughter.
    •                          Tin Nguyen, 31
      
          
      Nguyen was just 8 when her mother fled Vietnam with her child and maternal grandparents. The family toiled and saved their paychecks to rebuild after the war in a country they believed was safe. A place where "younger people would find their rewards through education."
      
                                                                                                      Nguyen graduated from Cal State Fullerton with a degree in health sciences. For more than four years, she had worked as a county health inspector. On the job, she screened plenty of mom-and-pop restaurants, and away from work, she made sure to stay in constant touch with aunts, uncles and nearly 30 cousins ranging from age 3 to 41.
      "You cannot imagine how caring she is. She had such a big heart," Emily Nguyen, 16, said of her cousin. "She never said no to us and would give you anything you asked."
      The extended family united every Sunday for dinner, according to uncle Phu Nguyen. "Tin was a huge part of our gatherings. Everyone loves her spirit, she is so cheerful and so wonderful to be with," he remembered. "Just days ago, she was trying on wedding dresses and had so much hope for the future."
      Nguyen and her longtime boyfriend San Trinh had planned to get engaged next year and to marry in 2017. The day before she was killed the couple toasted his 32nd birthday at a shabu-shabu restaurant.
      "I work day in, day out, saving money. I intended to buy her a new house. We would move her Mom in to live with us. We talked about everything, our marriage, how many kids we wanted to have," the mechanical engineer from Westminster said. "If I could tell people anything from this experience, I'd say: 'Whatever you're planning, don't push it off. Get it done.' "
      Her mother Vanessa called her daughter "such a good soul."
      "Only she can understand me, she understood everything I went through," said Vanessa Nguyen, sobbing.
      Mother and daughter had planned for a wedding at their beloved St. Barbara's Catholic Church, a few miles from their house.
      
      
      "She promised that no matter what, she would return to have her wedding there and now we're having a funeral," her mother said. "What will become of our lives?
    • .A GoFundMe account has been set up to help Nguyen's family at this difficult time. You can donate here: www.gofundme.com/jxd93cgs.
    • •                     Juan Espinoza, 50
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        Juan Espinoza, the youngest of 12 siblings, was raised in Sonora, Mexico.He immigrated to Indio when he was in his early 20s and worked at the Department of Corrections to put himself through Cal State San Bernardino.                                                                                                                                                                     He was hired as an environmental health inspector for the county.Juan Espinoza, of Highland, California, earned a bachelor's degree in science from Cal State San Bernardino and worked as a health inspector in San Bernardino County.

        
        “He was just a really hard worker,” his daughter Jerusalem Espinoza-Mendoza told The Press Enterprise. “He was very fair. He was just very honest.”

        
        According to the Los Angeles Times, Espinoza is also survived by a wife and a son.Juan Espinoza, of Highland, respected education so much he encouraged his eldest daughter to earn a bachelor’s degree with honors.

                                                                                                     “I do remember him always saying that education is something that can never be taken away from you,” said his daughter, Jerusalem Espinoza-Mendoza, 25.

        “It’s something that he instilled in me,” said Espinoza-Mendoza, who earned a bachelor of science degree in dental hygiene from Loma Linda University.

        He leaves behind his wife, Sandra Mendoza, 47; daughter, Jerusalem, 25; and son, Jonathan Espinoza-Mendoza, 13.      

        • You can donate here: https://www.gofundme.com/bedc6egc   
        • Harry A. Bowman, 46
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          Harry Bowman, left, of Upland, is seen here with his girlfriend Carri Wohlwend recently.
                                                                                                                  Raised in York, Pennsylvania, Harry A. Bowman moved to California more than 15 years ago.                                                                                                                                Bowman, a 46-year-old Upland resident, was a lover of the outdoors who doted on his two daughters. He had only recently been hired as a statistical analyst for the San Bernardino County Department of Public Health.
          
          For several years, he had been an expert on data sets and mapping for the University of Southern California's National Center for Risk and Economic Analysis of Terrorism Events.
          
          Bowman leaves behind two daughters, ages 11 and 15.
        • You can donate here: https://www.gofundme.com/zyddkqm4
        • Nicholas Thalasinos, 52
          
          
          
          Nicholas Thalasinos, pictured here with his wife, Jennifer, was a health inspector who moved to California from New Jersey, a friend told Philly.com. 
          The couple, who met online and had been together for 14 years, were Messianic Jews. Nicholas Thalasinos wore tzitzit, traditional fringe tassels, as well as a tie clip with the Star of David.
          "He became born again a couple of years ago, and because of that I had a very strong faith," she said, "so I know that he's in a much better place."
          He evangelized many, she said. "He wanted to serve the Lord and bring more people to the Lord."
          Friends recalled him as man who was always willing to lend a hand.
        • He had worked for San Bernardino's Department of Health for 12 or 13 years, his wife told ABC7. She said they had met online and were both Messianic Jews.
        • A friend paid homage to him on Facebook, saying he was one of the "nicest, honest, and godly men I know. I'm going to miss our talks and him calling to check on me almost everyday." Another friend wrote on Facebook, "I remember him caring about those who were less fortunate than himself.  
        • You can donate here: https://www.gofundme.com/apd6bz84
        • A GoFundMe campaign has been set up in honour of those who died in the San Bernardino masscre,
          San Bernardino Mayor R. Corey Davis announced you can donate at the: crowdfunding campaign,  to help raise money for the families of those affected by the shooting in which 14 people were killed and 21 others were wounded.
          “On behalf of the Mayor and Common Council of the City of San Bernardino, this campaign has been created to support the victims of the shooting,” Davis wrote on the campaign’s website.
          “The funds will be distributed evenly among the victims and their families via an official trust fund.”A GoFundMe campaign has been set up in honour of those who died in the San Bernardino massacre,
        • Despite only accounting for five percent of the global population, an astounding 31 percent of the world's mass shootings occur in the U.S. 
        • This year, there have been more mass shootings, defined as incidents in which four or more victims are shot,than days in the calendar year. 
        • The U.S. has seen 355 mass shootings so far in 2015. 
        • In a Nation where school rooms of murdered 6 and 7 year children at Sandy Hook Elementary School is tolerated as old news by the public and the media, we can expect a continued unlimited mass killings as a way of life.
        • This is not about who is to blame for all this carnage.
        • This is not about arguing politics.
        • This is not about hollow tweets of hashtags
        • This IS about people who are the same as you and myself who leave home and never return again because their lives or those of their loved ones are simply snuffed out  for no reason.
        • The response is universal hand wringing, outrage and NOTHING ever changes. Innocent, ordinary people continue to be murdered in this Country and no one truly cares to do anything about stopping these bloodbaths. Who and where will the next massacre in America take place? 
        • Whose loved ones will be next to be executed????
        • Let us mourn for all victims and for our Country.                                                                    
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