As seen in Issue 19 of The Simmons Voice:
Spreading awareness of a genetic disease
By Jackie Carlozzi
Polycystic kidney disease (PKD) is a common genetic disease that is not well known. According to the PKD Foundation Web site, one in every 500 people has it and 12.5 million people worldwide are struggling with it today.
Women such as Beth Leven, coordinator of the Boston PKD walk, Lisa Ostrow, accomplished artist and mother, and Kathy Curran, news reporter for WBZ, have all been affected by PKD through personal experience or as a witness to their loved ones struggles. These three women were kind enough to share their personal stories in order to raise awareness to the disease that has remained unacknowledged for so long. According to Leven, PKD is a “debilitating illness that reduces the function of the kidneys due to the growth of large cysts frequently causing the kidneys to grow to the size of a football.”
According to the National Kidney Foundation, the kidney acts as a filtration system for the body, removing toxins that could poison the body’s blood. PKD prevents the kidneys from functioning properly because they become so overwhelmed with fluid-filled cysts, causing toxins to compile in the blood. Unless removed, this results in fatal health consequences.
Through decades of kidney research, only two forms of PKD have been diagnosed. Ninety percent of all PKD cases are autosomal dominant PKD (ADPKD), which typically develops in adulthood, but can show earlier. The second form is autosomal recessive PKD (ARPKD), which is a rare form that develops before the infant leaves the womb. Both of these strains are inherited and passed along through each generation with a 50 percent chance that each individual in the next generation will inherit not only the mutated gene, but also the disease.
Ostrow’s twin daughters, Jennie and Laura, 13, were diagnosed with PKD when they were only four months old. It was first noticed during Ostrow’s pregnancy that there were some problems with the girls’ kidneys, which was likely to be ARPKD.
PKD was something Ostrow and her husband had never heard of. They had already had one healthy daughter, so when their twin daughters were diagnosed with the disease it was unexpected. According to the PKD foundation, ARPKD is a recessive strain. It can carry through generations but never show the effects of PKD on the carriers. This is why there was no family history of the disease for the Ostrows.
The twins look out for each other and have stayed in good health through policing each other on dietary things like sodium intake and making sure they get exercise. “They’re fortunate to have one another,” said Ostrow.
There is always the concern of what it could become for these young girls, but Ostrow monitors them and helps instill a valuable principle that “there’s nothing that can’t be done,” Ostrow said about helping her daughters live beyond PKD. “No one can put conditions on what you can do—only you can do that.”
The scientific research behind PKD has been increasing over the last few years, but there is still no cure, only treatments. When the kidneys begin to fail the options for treatment are scarce: dialysis or transplantation.
According to the National Kidney Foundation, there are two kinds of dialysis available for when the kidneys fail: hemodialysis and peritoneal dialysis.
Hemodialysis uses an external machine to pump out toxins, salts, and water.
Peritoneal dialysis focuses on the peritoneal membrane, where a catheter is inserted for about an hour and dextrose solution removes waste from the abdominal area. These forms of dialysis are extremely time consuming and may come with risks of serious infection and side effects, such as nausea.
Dialysis does not provide support to the kidneys, but acts as a partial replacement. It takes on the role the kidneys play for filtration, but does not match their effectiveness. Dialysis is not a permanent solution—just a treatment until a transplant can be obtained.
According to a Massachusetts regulation, in order to be eligible for a transplant, the patient must have undergone dialysis treatment. Transplants can come from live donors or cadavers. Only 25 percent of donations come from live donations. The average wait time for a transplant is two-to three years, but this can vary depending on where a person lives, their blood type, and whether they have certain “bad” antibodies.
Curran’s mother was on dialysis for ten years before finally receiving her cadaver kidney in 1998. The process was classified as “being highly sensitized, finding a blood and tissue match was extremely difficult,” said Curran. She had to go out of state just to be considered for a transplant before ultimately receiving one from Beth Israel Hospital.
Transplants are difficult to obtain in the New England region for various reasons, including strict rules. Leven transferred over to a hospital in Indiana, and after years of waiting for hospitals in Boston, she received her kidney from a cadaver almost immediately from the new hospital.
Today 12,800 people in Massachusetts have PKD, and at least 10,000 of them are waiting for a transplant, according to the PKD statistics.
Leven explained how transplants are commonly mistaken for cures, but the disease can come back at any time regardless of the new kidney; there is no cure. Along with the risk of the disease coming back, the patient has to be on immunosuppressant drugs for the rest of his or her life. On top of this, there is the risk that the body could reject the kidney or complications from infection could arise.
Cysts can continue to form and spread throughout other vital organs, such as the liver, and can cause serious problems in the brain and heart; it is the cysts which cannot be treated that make this disease so horrible.
“To this day, she is in tremendous pain due to the complications of PKD and polycystic liver disease. She has participated in several research studies and has had numerous surgeries. Cysts fill her core, her skin tears like tissue and she is in constant pain,” Curran said.
Dialysis and transplants were expensive, but now Medicare covers about 80 percent of the dialysis costs. For the first 36 months, it also covers 80 percent of the transplant costs and necessary medications, according to the National Kidney Foundation. After that, the patient has to find another way to supplement the costs.
This can be hard for many people, as genetic diseases face discrimination from health insurance agencies. Currently, many are hoping the Genetic Information Non-Discrimination Act (GINA), which would not allow employers or insurance agencies to use genetic information in making decisions about providing health care or hiring an individual, will get passed this year after 12 years of failing.
Many people who are healthy enough for clinical studies will not come forward out of fear that it will hurt their chances at employment or health insurance-a risk only a few are comfortable to take in the face of such loss. Right now the government, through Medicare and Medicaid, spends more than two billion a year for treatments related to PKD.
The act’s benefit is to save money and save lives. Clinical trials could “delay the onset of dialysis and potentially save the federal government
billions in Medicare dollars,” said Leven.
This does not leave much money for research. According to the National Institute of Health (NIH), it funds PKD research at $53 per person.
This is an astonishing number when you consider PKD is more common than hemophilia, cystic fibrosis, sickle cell anemia, Huntington’s disease, muscular dystrophy, and Down’s syndrome combined—all of which receive up to $1600 per person.
Those numbers do not dissuade the advocates, because with the PKD Foundation, they are not alone. According to Ostrow’s Web site, “the PKD Foundation is the only organization, worldwide, dedicated to promoting research to find a cure for polycystic kidney disease (PKD) and improving the care and treatment of those it affects.”
In fact, if it were not for the “aggressive and effective activism on the part of the PKD Foundation, its members and volunteers… who raised $2.4 million at nationwide walks in 2006,” Leven said. “Cutting-edge [research projects focusing on new] PKD therapies could be in jeopardy.”
The walks for PKD have shown how “one person’s volunteer effort or small donation goes a long way,” Leven said. These walks provide the necessary money for PKD research. With over 80 percent of the donations going directly to research, the increasing amount of participation increases each year with expectations and “anticipation that this September 21st walk will be the biggest yet at Artesani Park in Brighton” said Leven.
According to Leven, there are seven centers around the country, including Tufts-New England Medical Center and Beth Israel-Deaconess Medical Center in Boston who are investigating the disease and recruiting patients. Dr. Ronald Perrone, associate chief of Nephrology at Tufts and kidney transplant medical director, also serves on the PKD Scientific Advisory Committee. Perrone has said before how essential the Walk for PKD is, as it gives support to vital research, but also gives a place for people with PKD to interact.
Leven and Curran first got involved through the PKD walk after seeing the disease spread from generation to generation, devastating all those it came across—an all too common story for families who have been affected by PKD.
“After years of sitting around doing nothing for a cause I have lived with all my life, I decided to get actively involved. The miracle of the life altering gift that I received from a total stranger inspired me to give back to the community, especially PKD,” said Leven. She is now coordinator of the Boston Walk.
“I work hard all year long to increase awareness and raise money for research and education. From June to September, I devote all my free time,” Leven said.
Curran also takes part in the annual walks with her own team, “Curran’s Crew.” She has spread the word about PKD at her work place, where no one knew that is affected “hundreds of thousands of people.”
Curran’s hope that the walk will assist “by spreading the word about PKD [and then] more money will go [toward] research and someday there will be a cure…[it will] help end this disease and stop it from spreading from generation to generation.”
Ostrow has also gotten involved in spreading awareness for the disease. As an accomplished musical artist, she has recorded a CD called Unconditional, where all the proceeds from the sale will be donated to the PKD Foundation. Ostrow hopes her music will compel others to learn more about PKD and its hold on so many people.
“The glass is half-full for them; it’s a matter of finding a way around those obstacles and not succumbing to them. This is just one more challenge we’re going to meet,” said Ostrow.
The Walk for PKD is a powerhouse when it comes to spreading the word on the disease and getting people involved. The goal of the PKD foundation is for “no one [to] feel the full effects of PKD,” and that is exactly what all of these women and many more like them will continue working on, through raising money for research or educating the public in whatever way they can.
For more information on this disease, visit the PKD Foundation Web site at pkdcure.org
Posted: May 16, 2008 5:14 pm | 0 comments
Tags: Health and Sciences, PKD, The Voice
Interview with Carolina Liar - Full version - abbreviated version in The Simmons Voice Issue 16
Carolina Liar speaks the truth
By Jackie Carlozzi
New talent Carolina Liar is making their mark on the music industry as they get ready to release their first album Coming to Terms, this June.
During a recent phone interview with Chad Wolf, the lead singer of Carolina Liar, Wolf discussed the band’s direction and inspiration. Carolina Liar is an explosion of a hybrid pop/rock sound with a true singer-songwriter feel.
Their contagious sound is inspired by real life experiences that follow Chad Wolf’s journey all the way from South Carolina to California and include influences from the time spent in Sweden.
In fact, Carolina Liar is composed entirely of Swedish musicians--Jim Almgren Gandara, Johan Carlsson, Rickard Göransson, Max Grahn and Erik Hääger; the only exception is Chad Wolf who hails from South Carolina.
The story behind the band’s name, Carolina Liar, lies in Wolf’s past. He worked with a producer in California who would “call me a liar because of all my crazy stories from the past; nobody believed what I would tell them,” Wolf said.
In fact, it was these same stories and the transition from East coast to West coast that cultivates itself in the writing process. “All of the songs are, in essence, stories-it’s the movement,” Wolf said.
The most meaningful of the songs is “It’s a Beautiful World” according to Wolf. It was inspired by a friend’s battle with manic depression. Yet it can echo truth for everyone as Wolf explained that “It’s the process of knowing that the world is kind of a crazy place but you have to lie and pretend that it’s beautiful even when its not…But you have to work yourself through it.”
Wolf has been working with music for more than twelve years now, first being inspired by Duran Duran when in the third grade and hearing the tunes of Depeche Mode.
It turned into his dream to pursue a music career. “I went to Musicians Institute and studied there for about a year, but I was learning too much technical stuff, so I left. Now it’s about going back to your roots and playing really cool songs,” Wolf said.
This was just the beginning of a long journey for him, which had him leave South Carolina at age 22 with his guitar to seek an outlet that would allow the soul of his music to live.
“There [has] been a lot of struggle and being kicked around, a lot of people told me to stop and go get a real job. But I never listened; I think I was too dumb to tell you the truth,” reminisced Wolf.
Yet it was that same perseverance and unrelenting will that Chad saw at the time as stupidity, that would bring him to work with some of the industry’s biggest names like Diane Warren and Max Martin.
Carolina Liar in its entirety has been together since July 2007 when they were based out of Stockholm. But the process, sticking true to what Carolina Liar is about, was backwards. “At the time I had had another band I was working with, that’s where the majority of the record was put together, but I was doing a lot of it by myself. In the end a new band was formed and that’s what Carolina Liar is today,” Wolf explained.
Though catchy, there is a definite authenticity and realness to Carolina Liar that speaks on its own. “Its wild to tell a personal song or story and have people relate to it – I never expected to have it go that way- never expected it to move people- its interesting and humbling to see reactions and to see it work,” said Wolf.
If asked to describe their sound, Wolf had trouble finding words to outfit it because it’s not just another manufactured sound that can be summarized with words, it must be heard to be understood; its art and its soul.
Influenced heavily by classical pieces, Swedish artists, U2, and The Cardigans to name a few, Wolf said their music would be a cross between “Glenn Campbell meets The Beach Boys with The Killers, it’s all different," according to Wolf.
It has been a long road for Wolf where “most of the stuff [I have] done before was music no one ever got to listen to,” to now where the world is opening up for them.
Maybe it was the hard road to success that has kept Wolf a mellow and down-to-earth guy mixed with his refreshing understanding of opportunity, “Hopefully ill be able to do this again – the writing and the record- there’s no guarantee, so we are really taking advantage of it and doing everything we can, its pretty much a dream come true and you only get one shot at doing this thing. It’s so generic to say, but it’s so true, there are just no guarantees in life anywhere.”
Right now Carolina Liar is all about playing as many places as they can and “letting the music live and get out there.” Grahn and Wolf have been on a West coast promo tour for Carolina Liar playing radio stations but are really excited about “performing at a Canadian festival with Coldplay and Tom Petty and the Heartbreakers…there’s a lot of music to experience at festivals, they are great for that,”
said Wolf.
The band has been growing momentum and is looking forward to “a live set at the Cutting Room in New York City on April 8th and another performance on The Barry Nolan Show on April 10th – it’s about just playing for us, letting the music work," Wolf said.
With two singles already on iTunes and a brand new record on its way, Carolina Liar with a genuine love and passion for what they are doing have set out on a great adventure. There is no doubt that you will be hearing a lot more from these guys in the future, every experience for them is a new story just waiting to be embraced as a song. If you want to be inspired or are looking for music to relate to, Carolina Liar is a band you cannot afford to pass up on.
Posted: April 3, 2008 12:11 pm | 0 comments
Tags: Carolina Liar, The Voice Issue 16
I had the opportunity recently to do an interview with Chad Wolf (a very mellow and down to earth guy) the lead singer of Carolina Liar.
I will be posting that soon and it will be coming out in The Voice, but in the meantime, you should check them out online at www.myspace.com/carolinaliar or at www.carolinaliar.com where they have posted their new music video.
Upcoming events:
April 8th- The Cutting Room in New York City
for more info on the venue/etc:
http://www.thecuttingroomnyc.com/
April 10th- performance on Backstage With Barry Nolan
check for times and channels:
http://www.cn8.tv/channel/channelhome.asp?lChannelID=1009
Posted: March 30, 2008 1:13 am | 0 comments
Tags: Carolina Liar
yes i wrote a piece for the voice about the jonas brothers.
yes i have a 14 year old FANatic sister named Jesse who inspired the idea
yes, you CAN get over it.
thanks.
Posted: March 30, 2008 1:10 am | 0 comments
Tags: Yes
As seen in Issue 15 of the Simmons Voice:
"The Jonas Brothers are more than just a boy band"
When the anticipated stars rose from beneath the stage, the crowd went wild with deafening screams and cheers.
It was not for Valora, the new rock band from L.A. led by a strong female vocalist and backed by a seriously amplified band. Though they did give a solid performance that channeled a “Paramore” sound.
Nor was it for Rooney, the internationally known and traveled rock/pop band. They were both just the opening acts, receiving 30 minute slots each.
The screams were for the headliners: the Jonas Brothers. The B.U Agganis Arena played host to the young men on the last leg of their sold-out North American “When You Look Me in The Eyes Tour”-fittingly named after their current hit single which has been all over the ITunes top lists since its release in February. It also hit number one on Total Request Live the same day they played in Boston.
The Jonas Brothers are best known among teens and were the opening act for the infamous “Hannah Montana Tour” this past winter. But don’t write them off as just another group of Disney kids just yet.
The biological trio is composed of Kevin, Joe and Nick Jonas, who were originally discovered and signed by Columbia Records but later moved to Hollywood Records. The Brothers have been touring for about three years now with much more impressive acts than Hannah Montana.
They have opened for The Veronicas and performed at last spring’s Bamboozle Festival catering to an array of fans. They headlined their own summer tour in 2007 in small venues and now they are touring sold-out arenas on their own merit all across America.
What sets them apart from other young artists right now is the fact that they write all of their lyrics. They play their own guitars, drums, piano and yes the occasional tambourine-the entire show.
They refuse to become another manufactured “boy band,” and appear to be quite the quirky yet humble group who are in it for the music. Their hour and a half performance showed range with upbeat dance songs, encouraging tunes, slowed down love songs and a cover of the 80’s hit “Take on Me” made famous by a-ha.
The brothers play with an experienced backup band, consisting of John Taylor on backup guitar, Greg Garbo on bass, Jack Lawless on drums and keyboardist Ryan Liestman.
The group has been a cohesive unit with the Jonas’ for a few years now; with the exception of Liestman, who joined the band this year. And there is no loss of love from the fans for them either.
The show itself was an array of lights, which added excitement in the audience and enhanced the performance. There was a quick outfit change for the second half where they ditched their previous black ensemble for whites.
The all-of-three minute outfit change was filled with a documentary video of the Jonas’ life on the road. It left fans chanting for more because apparently three minutes without the Jonases seemed too much for them.
When the band returned to the stage they all got into the act with the youngest, Nick, on the drums introducing all the members of the group. They came out to his command, each playing trashcans and fire extinguishers to workup excitement for the next song.
After being satisfied by the unbelievable racket from the audience, they returned to their instruments and sampled a new song. Though their third album doesn’t come out until August, the audience never missed a beat. They were singing along and swaying their bodies furiously to the new tune.
There were sporadic dance moves and a few flips that were immediately coveted by the fans. But for the most part they stuck to doing what they do best: playing their instruments.
Kevin played lead guitar the whole night and at one point played dueling guitars seamlessly while habitually adding backup harmonies for his brothers.
It was during his solos on guitar that he really shined as a musician. He completely took the audience’s attention from his brothers in those moments and put himself in focus.
Joe acted the part of co-lead singer, but spent some time on the keyboard and Lawless’ drums. He played electric guitar with Kevin on the inspirational song “A Little Bit Longer,” penned about Nick’s fight with diabetes. And he shook his signature tambourine along with fans that brought their own in case he needed backup.
And then there was Nick, who seems young in comparison to his brothers yet had quite the stage command. Possibly squeezing the most dedication out of the adoring fans, he shared the vocals with Joe and played guitar steadily through almost every song.
He got up on the dueling drum set and took over for a few songs, and then there were his two appearances on the baby grand piano-once for their signature slow song, “When You Look Me in the Eyes” and again for “A Little Bit Longer.”
Despite their day-after-day hectic schedule they threw their all into the performance. The brothers hit some difficult high notes smoothly, and cued the fans when to clap along, wave, or just go crazy. They definitely were all over the stage working the screams out of their fans and giving them an entertaining show, to say the least.
Kelsey Garrity from Somerville stated the reason they shine is because “they always come out strong…Their voices stand out…They reach out to the crowd and they always bring their strengths.”
One fact is obvious, their music touches a lot of people, probably more than they ever imagined. The loyal base began steadily and continues to grow exponentially with every year they continue.
Maybe fan Jesse Carlozzi from Waltham was on to something when she said she liked them because “they are real, normal people like you and me, not pretentious or fake.
Just teenagers going through the same stuff other teens are going through and not just making fun music, but music we can relate to, stuff that happens everyday to everyone of us. You [cannot] not like them, they worked hard for where they are and keep working harder and are living the dream,” said Jesse Carlozzi.
Another thing for sure is that the Jonases are all very appreciative of their success. Repeatedly thanking and praising their zealous fans who have all become smitten with the guys’ charisma, dedication and normalcy.
The concert was a night full of screaming, clapping, waving and glow stick madness among the loving fans. There were strong performances delivered by the entire band. And by the end of the night it was clear that their future looks bright as headliners.
These platinum selling artists who are about to tour internationally are the next big thing with a lot of projects up ahead. Before you typecast the band of brothers, you might want to take a listen; you may just be surprised at what you hear.
for more info:
www.myspace.com/jonasbrothers
www.myspace.com/valora
www.myspace.com/rooney
Posted: March 30, 2008 1:08 am | 0 comments
Tags: Simmons Voice Issue 15
