FTD – Planning for Hope: Living with Frontotemporal Disease

From co-producers Susan Grant, an FTD patient, and her caregiver Cindy Dilks, “Planning for Hope” captures some of the most brilliant and passionate researchers exploring early diagnoses for this rare disease.

Frontotemporal Disease or Dementia (FTD) has been misdiagnosed along with other neurodegenerative diseases that cause dementia in young people in their 40s, at the peak of their careers and in the prime of their lives.

Most importantly, families have stepped forward in this poignant documentary to share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones.

Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families.

Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

This trailer introduces Frontotemporal Disease (FTD), a dementia second in prevalence to Alzheimer’s Disease.

You also may download a free eBook that accompanies this film, “Know the Early Signs of FTD” at http://www.slideshare.net/FTDPlanning… that will aid you in recognizing the early warning signs of FTD and show you how to approach getting a diagnosis.

Early detection matters.
Know the early signs of FTD.

Season Greetings

Widower re-creates wedding photos with 3-year-old daughter in heartbreaking series

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

At left, a wedding photo Melanie Pace took of her sister Ali and Ben Nunery in 2009. At right, one she took this year of Ben Nunery and his daughter Olivia, two years after Ali died.

An Ohio man grief-stricken after losing his wife to cancer wanted one last memory of the day they became newlyweds and the home they shared together before she died.

So Ben Nunery re-created their bride-and-groom photos with his daughter, Olivia, in his late-wife’s place.

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Photographer Melanie Pace took this photo (top) of her sister Ali on her wedding day in 2009. This year, Pace photographed Ali’s daughter (bottom) to re-create her late sister’s wedding photos.

Dressed in pink instead of white, the 3-year-old mimics her mom’s poses, clutching a curling iron in one shot, gazing up into her father’s eyes in another tender photo.

The series is beautiful and heartbreaking, but Nunery, 34, wants the world to know his story isn’t “about grief and loss and hurt,” he writes on his blog.

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Ben Nunery, whose wife Ali died in 2011, re-created his wedding photos with the couple’s 3-year-old daughter Olivia.

RELATED: BREAST CANCER SURVIVOR DOCUMENTS FIGHT WITH VIDEO

“Yes, I’ve gone through those emotions and still do, but that’s not what I want people to see in these photos.”

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Above, Ben Nunery and his wife Ali smile on their wedding day in 2009. Below, Nunery poses with his daugther Olivia, two years after Ali died from lung cancer.

Nunery and his wife, Ali, bought the Cincinnati house a day before their wedding more than 4 years ago. Ali’s sister Melanie Pace, a professional photographer, took the original wedding photos the morning the couple married.

“As wedding days go, it all happened in a blur, but those images represent some of the happiest moments in my life,” Nunery wrote. “It was the beginning of what we planned on being a long and happy life together.”

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Ben Nunery’s wife Ali died in 2011 from a rare form of lung cancer. This year, before moving out of the house they shared, he re-created their wedding photos with the couple’s young daughter, Olivia.

Ali died in 2011 from lung cancer, just a year after Olivia, their first child, was born.

RELATED: HUSBAND’S PHOTOS OF WIFE’S BREAST CANCER BATTLE

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Ben Nunery with his 3-year-old daughter Olivia. His wife Ali died in 2011.

Two years later, with boxes packed and ready to move out of the home that held so many memories, Nunery called on his sister-in-law once more.

“I struggled with the thought of saying goodbye and walking away without having something to commemorate such a big step in mine and Olivia’s life,” Nunery explained.

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Ben Nunery re-creates a classic pose with his wife (left) in 2013 with his daughter (right).

So he took more wedding photos, only this time with a different partner. Pace shared the photos of Nunery and Olivia on her website this week.

“It was fun and strange and sad and comforting and just about every other emotion you can think of,” Nunery said. “And, it wasn’t until I drove away that the significance of what we had just done hit me like a ton of bricks. These would be the last memories in that house.”

MELANIE TRACY PACE/LOFT3 PHOTOGRAPHY

Ali and Ben Nunery’s daughter Olivia, 3, poses for one last photo in the home that holds so many memories. Two years after Ali died, Ben and Olivia are moving out.

Read more: http://www.nydailynews.com/life-style/widower-recreates-big-day-daughter-article-1.1551477#ixzz2nw4ytOLp

Genzyme’s U.S. Field Team, helping patients with Rare Diseases

Patients living with rare diseases can feel isolated and helpless. Members of Genzyme’s U.S. field team share how the company provides lifelong support for these patients through facilitating testing and diagnosis, providing educational materials, helping patients manage their treatment, and continually developing new therapies.

http://www.checkorphan.org/grid/video/genzyme-s-u-s-field-team-helping-patients-with-rare-diseases-2

Working to find a cure for brain cancer

My son Owen was treated for brain cancer when he was just three years old. At first, it was difficult for me to accept the fact that my child was sick. Getting involved with the National Brain Tumor Society and participating in their events has been our outlet and resource.

I now know how important it is to raise awareness about this deadly disease and to fund the research that will find better treatments. Owen is one of the lucky survivors, but every day, men, women, and children, like my son, are fighting for their lives. Right now—you can help twice as much with a gift to the National Brain Tumor Society during their 2013 Leadership Matching Gift Challenge. Make A Gift Today.

Working to Find a Cure
In 2014, nearly 69,000 new brain tumor diagnoses will be made in the U.S. alone.  Brain tumors can occur in anyone—adults as well as children. Almost 700,000 people are living with tumors of the brain and central nervous system today.

As the largest nonprofit dedicated to the brain tumor community in the United States, the National Brain Tumor Society is fiercely committed to helping patients like Owen, and converting scientific breakthroughs into new and effective treatments. Give today and your gift will be doubled through the 2013 Leadership Matching Gift Challenge.

Double Your Impact Today
Thanks to generous, private supporters, your gift to the National Brain Tumor Society will have twice the impact! From now until December 31, 2013. Your tax-deductible gift makes potentially life-saving breakthroughs possible, helping turn scientific discoveries into clinical advances that keep patients like my son alive and well ever longer.

Please give today—because a cure can’t wait!

Thank you!

Working to help those with pulmonary fibrosis

You’ve probably heard of pulmonary fibrosis (PF), it’s an incurable lung disease characterised by stiffening of the lungs and inflammation of lung tissue. You may even know someone who has it, or have it yourself. But today we would like to share the work of the McKeehan family with you.

Before PF, Mike McKeehan was incredibly fit, he ran the Lilac Bloomsday run (approx.. 12km) every May, no matter what the weather, and even one year completing it in a wheelchair. But slowly Mike started being short of breath, and before long running became too hard, and then walking.

Sadly, Mike died on 19^th July 2012, but his family and his community are working hard to help others in his memory. Mike’s daughter, Katie turned to the Pulmonary Fibrosis foundation (PFF) for help, and the whole family signed up to for the next Lilac Bloomsday run. Katie continues to fight for awareness and funding, and says “I just hope that with my fundraising I can bring more awareness about the disease and be a part of the fight for a cure.”

Working through her pain to help others in need, we find Katie to be an inspiration, and we hope that you do too.

The PFF is a non profit organisation based in the USA which aims to increase awareness of PF, help find a cure, advocate on behalf of the community and provide a supportive environment for sufferers and their families. The foundation recently announced a plan to establish a care centre network and patient registry.

Battling Back: FSU Trustee Allan Bense Fighting Rare Disease

Bense, chairman of the Florida State University Board of Trustees, also yearned to be in Gainesville the previous week to revel in FSU’s beat down of archrival University of Florida.

But Bense has been focused on far more basic and important matters, such as relearning how to dress himself in the morning and relearning how to walk.

Bense, 62, a Panama City businessman who was speaker of the Florida House of Representatives in 2005 and 2006, is spending his days in a clinic in Atlanta, recovering from a debilitating ordeal that began without warning almost 100 days ago when Bense was diagnosed with Guillain–Barré syndrome.

One day he was fine and playing golf. The next day his fingers and toes started tingling out of control. Two days later he couldn’t move.

His brain was fine but his body had betrayed him. He couldn’t communicate, and he was in constant agony.

“The pain is very intense. I’ve experienced some of the longest nights of my life,” Bense said during a telephone interview. “They say you can tell a Guillain–Barré patient by where the screams come from at night. I’ve kind of gotten beyond that now. My pain is at a minimum.

“It’s been a rough ride, but we’re hanging on and improving every day,” he added. “I think I’ve turned the corner. I still have a long way to go but I see some daylight.”

That wasn’t the case for most of September and October. Bense began his medical journey at Gulf Coast Hospital in Panama City, spent one week at Shands Hospital in Gainesville before returning to Panama City, where he underwent multiple plasma transfusions in an attempt to rid his body of the toxins attacking his nervous system.

Guillain–Barré can be life-threatening, as Bense can attest. It strikes fewer than two in 100,000 individuals. About one-third of the cases are traced to an infection, but physicians have no clue about the cause for the other two-thirds, including Bense, who are forced to cope with Guillain–Barré.

Bense and his wife, Tonie, have been in Atlanta since early November. He is a patient at Shepherd Center, a rehabilitation facility that specializes in brain and spinal-cord injuries.

House Speaker Will Weatherford, Bense’s son-in-law, brought his wife and three daughters to Atlanta for four days to be with the Benses over the Thanksgiving holiday.

“He’s my mentor and my best friend. To see him go through this is very challenging,” Weatherford said. “You know, life throws you curve balls sometimes and it’s thrown a curve ball to Allan. I’m not surprised to see him battling back. I’m looking forward to the day when we go back on the golf course together.

It probably will be a while. Bense said he has every intention of attending the next FSU trustees meetings — he missed two this fall — scheduled for January and March, but he may be in a wheelchair. He hasn’t even started physical therapy to relearn walking.

“I have to build back my lower body strength. The key is to be patient,” Bense said. “It’s a marathon, not a sprint.”

FSU President Eric Barron marvels at Bense’s determination and positive spirit. Barron relied on Bense’s family members for regular updates until recently, when he was able to have actual conversations with his board chairman.

“Allan’s one of those people who’s driven and wants to excel. Here, he faces a tremendous challenge and just steps up and says he’s going to beat it,” Barron said. “I think there’s more and more evidence that your attitude makes a big difference in your recovery, and here’s more proof of that.”

Despite his isolation and the debilitating effects of his illness, Bense has delighted in following Florida State’s unbeaten football team and its magical season, with FSU just one win away from a national championship.

“I wish I could be at every game. I miss being around the university, the kids and the faculty. I do wish I could be there to celebrate,” Bense said. “I’m proud of the players, I’m proud of the coaches and very proud of the way they’ve handled themselves. It’s a good time to be a Seminole.”

Source: Tallahassee.com

Experts Discuss Juvenile Batten Disease

Researchers and clients met at the University of Rochester Medical Center Saturday to discuss the transition of a crippling and rare disease from lab research, to patient trials.

Juvenile Batten Disease first causes blindness in early childhood, then breaks down cognitive and motor skills. The disease ultimately results in death in the late teens or twenties.

Only one to two kids in every 100,000 are born with this genetic disease.

Almost 30 people from around the world came together to collaborate data and thoughts about the next step in treating the disease. 

“We need an international effort to combine our data and our knowledge about the disease,” said Angela Schulz of the University Medical Center in Hamburg, Germany. “The ultimate aim is to find a tool to measure whether a new treatment was effective or not, and you can only have such a successful tool when you have a lot of patients’ data.”

The URMC is one of only five Batten Disease Centers of Excellence in the United States.

Source: Your News Now Rochester

WHO Predicts 26 Million Deaths Avoidable if Governments Implement Appropriate Vaccination Programs

DOHA, Qatar,  — Sidra Medical and Research Center Hosts Excellence in Paediatrics Conference in Qatar

The World Health Organization’s Coordinator for Programme and Impact Monitoring in the Department of Immunization, Vaccines and Biologicals, Dr. Thomas Cherian predicts that 26 million deaths from vaccine preventable diseases could be averted in the next decade, but only if national governments act now. While speaking at the Excellence in Paediatrics Conference hosted by Sidra Medical and Research Center in Qatar, he advocated for the following steps to be taken to achieve this goal:  

• Generate political commitment and promote country ownership of national immunization programs, ensuring better governance, adequate investments, and a strong emphasis on evidence for prioritization and planning at the national level.
• Strengthen immunization systems and promote greater integration with broader health systems.
• Increase access to an affordable supply of quality vaccines to all populations.
• Improve the availability and quality of data and information to monitor performance.
• Empower pediatricians to create awareness, allay fears, and use every contact with children and families to check and immunize when it is indicated.

“While immunization already prevents millions of deaths and uncounted illnesses, we must continue working together in supporting countries to deliver life-saving vaccines to people in every community and in every country,” added Dr.Thomas Cherian. He continued, “Together, we can make the Global Vaccine Action Plan vision ― a world in which all individuals and communities enjoy lives free from vaccine-preventable diseases ― a reality.”

As part of Sidra’s mission to provide world-class medical education to healthcare professionals in Qatarand across the region, Sidra partnered with the Excellence in Paediatrics Institute to bring their flagship conference to the Middle East for the first time. While opening the event, Sidra Chief Executive Officer Dr. William Owen said, “The common thread for us all is to achieve greatness by nurturing the potential of the individual. And building potential begins with creating and maintaining health among our children and for our children yet to be born. I see education, which is the mission of this event, as being the first step in this.”

EiP is the first of many international-caliber events Sidra will bring to Doha to ensure that best-quality education is available to all, which includes sponsoring a number of pediatricians from emerging markets to attend the events.

Source: World Health Organization

Help Find Camden a Cure and Make Cystinosis Disappear

By Amanda Castro

GORDON, Georgia (41NBC/WMGT) – As we countdown the days until Christmas, one Middle Georgia boy isn’t asking Santa for toys, but instead a miracle. He is battling a rare and deadly genetic disease called cystinosis.

Under the glow of the Christmas tree, eight-year-old Camden Sanders is looking for a special gift.

“What are you looking for under that tree?” 41NBC asked. “A cure!” Camden answered.

A cure for cystinosis. He was diagnosed four years ago. According to the Cystinosis Research Foundation, only 500 people, mostly kids, are diagnosed in the U.S. The amino acid, cystine, crystalizes and builds up in his cells until they are destroyed. It’s a disease that effects his entire body.

“It effects their eyes, their heart, their muscles, their bones, their kidneys,” Camden’s grandmother Marie Sanders said.

It even effects his size. Camden’s five-year-old brother Colin towers over his tiny frame. His grandmother says Camden takes more than 400 pills and half a gallon of liquid medicine through his stomach tube a month.

“Do you have more good days or tired days?” 41NBC asked. “Tired days,” Camden answered. “What makes you so tired?” “That medicine, the medicine makes me tired.”

But this only prolongs his life. There is no cure.

“I had rather do this battle for Camden if I could,” Marie Sanders said.

It’s a battle she can’t fight alone. She is calling on you to “Help Camden Find a Cure.” Through the non-profit, Marie hopes to raise money and awareness for cystinosis.

“These kids need our help, they really need our help,” she said.

Despite the disease, Camden takes his illness in stride.

“Are you scared?” 41NBC asked. “I’m scared of the dark,” Camden answered.

Camden is already in Stage 3 of kidney failure. His grandmother is hoping they can wait till he gets a little older before he has to have a kidney transplant.

“Help Camden Find a Cure” is holding a magic show fundraiser this weekend to raise money for cystinosis research. The show is Saturday, December 7 at the Plaza Arts Center in Eatonton. Tickets are $15 and doors open at 6 p.m.

Source: NBC News