Invitae Announces Major Expansion of Its Neurology and Cardiology Test Offering

Aug.15, 2016

— Introduces new panels for Parkinson’s disease, neuropathies, and neuromuscular diseases 

— Adds new genes to panels for arrhythmias, cardiomyopathies, aortopathies, and congenital heart disease; introduces a new cardiomyopathy and skeletal muscle disease panel 

SAN FRANCISCO — (BUSINESS WIRE) — 

Invitae Corporation (NYSE: NVTA), a genetic information company, today announced that it has expanded its neurology and cardiology test offering, adding 11 new panels for heritable diseases. In addition, Invitae has updated 17 existing neurology panels and eight cardiology panels based on new discoveries in genetics research. 

With this latest expansion of its test offerings, Invitae will be able to provide clinicians, patients, and payers with even higher-quality information on genetic changes that have been shown to influence a variety of neurologic and cardiovascular disorders – for the same price and with the same three-week average turnaround time. The new panels will be available immediately to children’s hospitals, pediatricians, and medical genetics professionals for clinical diagnosis and care. 

“Invitae is steadfast in its commitment to making high-quality genetic tests based on the latest clinical and scientific evidence available to patients and their family members,” said Robert Nussbaum, MD, chief medical officer of Invitae. “The launch of our new and updated panels clearly illustrates our ongoing dedication to careful and comprehensive gene curation.” 

Expanded neurology testing

With this expanded neurology offerings, Invitae provides clinicians, patients, and payers with more options for high-quality, affordable genetic testing, including: 

• Invitae’s Hereditary Parkinson’s Disease & Parkinsonism Panel – analyzing up to 17 genes associated with Parkinson’s disease and related conditions involving Parkinsonian features 
• Invitae’s Comprehensive Neuropathies Panel – 78 genes covering Charcot-Marie-Tooth (CMT) disease, hereditary motor neuropathies, hereditary sensory and autonomic neuropathy, and riboflavin transporter deficiency neuronopathy 
• Invitae’s Comprehensive Neuromuscular Disorders Panel – 116 genes covering muscular dystrophy, myopathy, and congenital myasthenic syndrome 
• Additional myopathy panels, including a hyperkalemic periodic paralysis test, a hypokalemic periodic paralysis panel, an inclusion body myopathy panel, and an autophagic vacuolar myopathy panel 
• Additional neuropathy panels, including hereditary sensory and autonomic neuropathy panels, a hereditary motor neuropathies panel, and a riboflavin transporter deficiency neuronopathy panel 
• Updates to existing panels to incorporate the latest research findings:
  • 13 new genes for the comprehensive CMT panel for a total of 45 genes 
  • 20 new genes for the comprehensive hereditary spastic paraplegia (HSP) panel for a total of 63 genes 
  • Updates to 15 additional panels across our neurology offering 

“Genetic testing for hereditary Parkinson’s disease has fundamentally changed the way in which we look at providing answers to families affected with this devastating condition,” said J. William Langston, MD, chief scientific officer and founder of the Parkinson’s Institute and Clinical Center. “My hope is for every person with early-onset Parkinson’s or a family history of the disease be provided the opportunity to have genetic testing, so we can work together to develop better treatments and improve healthcare for everyone.” 

Invitae’s latest expansion of its test offering is based on the latest research findings in genetics across various panels. For example, three peer-reviewed papers published in the past year show evidence that the MORC2 gene causes CMT disease, and therefore was added to Invitae’s comprehensive CMT panel: 

• Sevilla T, et al. Mutations in the MORC2 gene cause axonal Charcot-Marie-Tooth disease. Brain. 2016 Jan;139(Pt 1):62-72. doi: 10.1093/brain/awv311 
• Albulym OM, et al. MORC2 mutations cause axonal Charcot-Marie-Tooth disease with pyramidal signs. Ann Neurol. 2016 Mar;79(3):419-27. doi: 10.1002/ana.24575 
• Laššuthová P, et al. Severe axonal Charcot-Marie-Tooth disease with proximal weakness caused by de novo mutation in the MORC2 gene. Brain. 2016 Apr;139(Pt 4):e26. doi: 10.1093/brain/awv411 

“We are excited to see the addition of new genes in Invitae’s CMT panel,” said Susan Ruediger, patient advocate and Director of Development at the Charcot-Marie-Tooth Association (CMTA). “Comprehensive genetic testing can provide patients with a definitive diagnosis, which is critical for the treatment and management of the disease.” 

Cardiovascular panels aligned to new research

Understanding of the genetic links to cardiovascular disease is rapidly advancing. Invitae has expanded eight existing cardiology panels to reflect recent advances in the field to provide comprehensive, evidence-based test options for diagnosing aortopathies, arrhythmias, cardiomyopathies, and pulmonary hypertension. Additionally, Invitae has added a new cardiomyopathy and skeletal muscle disease panel for patients who exhibit overlapping features of both heart and skeletal muscle disorders that analyzes up to 157 genes associated with neuromuscular disorders and cardiomyopathies. 

“The role of genetic testing in diagnosing cardiovascular disease is rapidly expanding, now offering us insights that can help patients with a variety of conditions, such as dilated cardiomyopathy and primary arrhythmias,” said Ray Hershberger, MD, professor of cardiovascular medicine and director of the division of human genetics at The Ohio State University Wexner Medical Center. “Importantly, genetic testing can also help us understand when cardiac problems are actually the first symptoms of a broader genetic disease. Expanding our ability to access clear and comprehensive genetic information will help us better diagnose and treat patients.” 

This expanded offering includes state-of-art cardiovascular genetic testing with panels expertly curated and updated by medical and genetics experts. The Invitae Cardiomyopathy and Skeletal Muscle Disease Panelis a convenient and economical option for patients presenting with overlapping features associated with cardiomyopathies and muscular dystrophies that typically require multiple test orders. 

Affordable, transparent pricing

Invitae offers a transparent pricing structure independent of the number of genes required to provide an accurate diagnosis within a single clinical area. For payers and institutions that are in contract with Invitae, the price per clinical area can be as low as $950, depending on the payer’s requirements. For third-party payers with whom Invitae is out-of-network and for non-contracted institutions, the price per clinical area is $1,500. In addition, for patients without third-party insurance coverage or who do not meet insurance criteria for coverage, Invitae offers its full test offerings for $475 per clinical area (see website for more details). 

About Invitae

Invitae Corporation’s (NYSE: NVTA) mission is to bring comprehensive genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. Invitae’s goal is to aggregate most of the world’s genetic tests into a single service with higher quality, faster turnaround time, and lower price than many single-gene and panel tests today. The company currently provides a diagnostic service comprising hundreds of genes for a variety of genetic disorders associated with oncology, cardiology, neurology, pediatrics, and other rare disease areas. For more information, visit our website at invitae.com. 

Safe Harbor Statements

This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995, including statements relating to the availability of the company’s new panels; the effect of the company’s expansion of its test menu and its ability to provide higher quality information on genetic changes; and that such information will lead to better diagnoses and treatments for patients. Forward-looking statements are subject to risks and uncertainties that could cause actual results to differ materially, and reported results should not be considered as an indication of future performance. These risks and uncertainties include, but are not limited to: risks associated with the company’s ability to use rapidly changing genetic data to interpret test results accurately, consistently and quickly; the company’s ability to develop and commercialize new tests and expand into new markets; the company’s history of losses; the company’s need to scale its infrastructure in advance of demand for its tests and to increase demand for its tests; the risk that the company may not obtain or maintain sufficient levels of reimbursement for its tests; laws and regulations applicable to the company’s business, including state licensing requirements and potential regulation by the Food and Drug Administration; and the other risks set forth in the company’s filings with the Securities and Exchange Commission, including the risks set forth in the company’s Quarterly Report on Form 10-Q for the quarter ended June 30, 2016. These forward-looking statements speak only as of the date hereof, and Invitae Corporation disclaims any obligation to update these forward-looking statements. 

NOTE: Invitae and the Invitae logo are trademarks of Invitae Corporation. All other trademarks and service marks are the property of their respective owners. 

View source version on businesswire.com: http://www.businesswire.com/news/home/20160815005210/en/

https://www.freshnews.com/invitae-announces-major-expansion-of-its-neurology-and-cardiology-test-offerings/20160815

Kevin Burkart has Made 502 Skydiving Jumps for His Dad

News from NPF
Aug. 15, 2016

Since his dad was diagnosed with PD, Kevin has made 502 skydiving jumps, raising more than $390,000 for Team Hope™ for Parkinson's. 

Kevin Burkart's dad was all set to retire in 1999 when he developed an uncontrollable tremor in his hand. Soon after, he was diagnosed with PD. 

As a professional skydiver, Kevin thought, "What if I try to do 100 skydives ito raise awareness and funds for Parkinson's?" 

That led to two events in which he made first 100, then 200, "perfect" jump raising $126,000 for the fight against Parkinson's. When a life-changing snowmobile accident left Kevin's left arm without mobility, he kept jumping for PD and his beloved dad — calling his asymmetrical, one-armed jumps "imperfect." 

In all, Kevin raised more than $390,000 to help people with Parkinson's. He chose the National Parkinson Foundation (NPF) and the NPF Minnesota Chapter as beneficiaries because "They have the strongest mission and evidence-based research to help improve the lives of people living with PD today." 

"NPF has truly been a partner in my family's journey," says Kevin.

http://www.parkinson.org/get-involved/team-hope-for-parkinsons/resources

Patients hit back against Parkinson’s at Troy gym

Francis X. Donnelly, The Detroit News
August 15, 2016

Troy— Getting punched doesn’t sound like good therapy. It’s even less appetizing if you have Parkinson’s disease.

So how to explain the growing number of gyms and health clubs offering boxing as an antidote for the disorder?

Well, first of all, nobody is getting smacked.

Instead of each other, they hit trainer’s mitts and speed and heavy bags, said Mike Martelli, owner of The Boxing Rink in Troy. The more agile participants also skip rope, step through ladders and slap heavy rope against the floor.

The workout helps counter symptoms of Parkinson’s — loss of agility, endurance, strength, he said. Boxing also requires coordination.

“It helps with their balance,” said Martelli. “Boxers have to use different planes of motion.”

They may not be bopping each other but, make no mistake, they are warriors.

They are embroiled in a battle royal with a sickness that ravages their bodies. Their brains stop producing dopamine, which helps regulate movement.

The body freezes. The speech slows. The thinking becomes confused. It worsens over time, and there is no cure.

Standing up to this onslaught are people in their 60s and 70s wearing boxing gloves.

Because of their courage, the gyms and health clubs don’t refer to them as victims or patients or afflicted. They call them fighters.

“I want to be independent,” said fighter Ray Cummings of Shelby Township. “I’ve been independent my whole life. Why change it now?”

This novel way of treating Parkinson’s was discovered by accident.

Scott Newman, an Indianapolis prosecutor with the disease, had taken up boxing and found it improved his agility.

In 2006 he began Rock Steady Boxing, which has grown to 89 affiliates around the U.S. Besides The Boxing Rink, the other affiliate in Metro Detroit is the Beverly Hills Club.

While Newman’s discovery hasn’t been scientifically proven, medical research suggests he may be on to something.

A 2011 study in the Journal of American Physical Therapy Association found that two to three 90-minute sessions a week for nine months at Rock Steady yielded improvements in balance and walking.

A key to the therapy may be that it treats so many symptoms of Parkinson’s, from mental to physical ones, said researchers.

“Increasing evidence suggests that ongoing vigorous exercise may favorably influence this progression,” said Dr. Eric Ahlskog, a Mayo Clinic neurologist who has studied Parkinson’s for 30 years.

Finding a support group

A class at The Boxing Rink last week began with a dozen people gathered in a circle.

Their ages ranged from 53 to 86. Their ailments ran the gamut: tremors, slow movement, rigid muscles, muscle cramping.

The hands of one man were shaking so hard he hid them behind his back.

The walls held hockey and boxing photos and memorabilia, owing to the gym’s origins. Martelli opened it in 2014 to teach hockey players not to fight, which is against the rules, but “to defend themselves.”

In the circle, everyone introduced themselves, gave their ages and how long they’ve had Parkinson’s.

They sometimes talk about treatment, common problems or what’s happening in their lives, said Martelli.

It quickly became clear this wasn’t just an exercise class. It was a support group, a social gathering.

That’s one of the things Dan McEachin of Troy likes best about Rock Steady.

Parkinson’s can be isolating because it discourages people from leaving their homes, he said.

Rock Steady coaxes them from their abodes by offering therapy and the chance to socialize with people who are going through the same thing they are.

“It’s a community,” said McEachin, 64, a retired state social worker who was diagnosed two years ago. “We all share the same thing.”

They come to class up to four times a week.

After talking in the circle, they stretched and then walked in a circle, raising their knees. Some used walkers while others jogged.

They even exercised their voices, which also are affected by Parkinson’s. They screamed as loud and long as possible.

During the drills, Martelli barked at them good-naturedly.

A way to move 

To keep the classes fresh, Martelli constantly changes the routine. Some sessions involve games. Others have singing and dancing.

At last week’s session, it was finally time to box.

With rock music playing, the fighters worked on the heavy bags, counting out the punches as they threw jabs, crosses, uppercuts and hooks.

Some hit the bags hard while others gently touched them.

“Keep punching, Phil,” exhorted Martelli. “I want to hear you. Keep it going. Time’s not up yet.”

The ones with more advanced cases of Parkinson’s are required to bring someone who helps them keep their balance during the drills.

The assistants, called corner people, held on to a belt around the fighter’s waist.

The punching exercises lasted three minutes and ended with a bell, just like a boxing match.

It was a mild workout but, because of the disease, most of the class was sweating and tired quickly.

Simon Zakalik of Farmington Hills had a second reason for being pooped. He is 70. He finished the heavy bag session in a chair.

At the end, he and his corner man, Jamie Stoops, high-fived each other.

Zakalik, a retired electrical engineer who was diagnosed in 1998, said five months of workouts have helped him walk without a walker.

“The whole thing is useful,” he said about Rock Steady. “Anything that gets us out and about and moving.”

The T-shirts of most of the men read: “In this corner, hope.”

Quieting the ‘big bully’

After putting on his boxing gloves, Paul Bologna of St. Clair Shores jokingly asked a reporter if he wanted to fight.

But he quickly lost his will to tussle after a few minutes with the heavy bags. After the bell rang, he closed his eyes and sighed.

“If you’re not tired, you’re not doing it right,” he said.

Bologna, 63, a retired electrician who was diagnosed in 2011, said Rock Steady has helped improve his balance and lessen his tremors.

The program made him realize Parkinson’s doesn’t mean one can no longer be active.

“This is the best thing that ever happened to me,” he said. “It got my butt moving again.”

Another fighter, Jim Walters of Troy, joined the program a few weeks ago but already feels different.

Before he got Parkinson’s in 2003, Walters, a supervisor in the Oakland County water department, was active, outgoing, garrulous.

The disease robbed him of that, he said.

“I’m like anyone else who retires. I want to go out in the sun,” he said. “I can’t do that.”

He tried other types of therapy but found them too simplistic, boring.

Rock Steady, with its boxing and games and singing, is fun, he said.

Walters’ son, Robert, who is his corner man, noticed the difference right away.

For the first time in a long time, Jim, 71, can climb the stairs in his two-story home, said Robert. His father is more attentive during conversations. His whole attitude seems better.

“It’s like a big bully,” Robert said about Parkinson’s. “But this allows him to fight the disease. It says: ‘You’re not eating my lunch.’”

Best of all, Jim said he is getting chatty again. The social butterfly is back.

fdonnelly@detroitnews.com

Boxing therapy

Two places offer Rock Steady Boxing in Metro Detroit:

The Boxing Rink in Troy: (248) 817-5243 or www.TheBoxingRink.com

Beverly Hills Club in Beverly Hills: (248) 642-8500 or www.joinBHC.com

http://www.detroitnews.com/story/life/wellness/2016/08/15/parkinsons-boxing-therapy-treatment/88741266/

Cynapsus Announces Positive Opinion from Data and Safety Monitoring Board on Phase 3 Parkinson’s Disease Clinical Study Allowing for At-Home Titration

TORONTO, Aug. 15, 2016 (GLOBE NEWSWIRE) 

-- Cynapsus Therapeutics Inc. (NASDAQ:CYNA) (TSX:CTH), a specialty central nervous system (CNS) pharmaceutical company developing and preparing to commercialize a fast-acting, easy-to-use, sublingual thin film for the on-demand management of debilitating OFF episodes associated with Parkinson’s disease (PD), announced today that its Data Safety and Monitoring Board (DSMB) has completed a review of the safety data from the Company’s Phase 3 program including both the CTH-300 and CTH-301 clinical trials. Based on the DSMB’s recommendations, the CTH-300 trial will continue as planned. In addition, as a result of the DSMB’s review of the early safety data from both CTH-300 and CTH-301, the six-month open label CTH-301 study will be amended to allow for at-home titration, after the patient’s initial visit to the clinic.

The DSMB is an independent body of experts drawn from the fields of clinical medicine biostatistics and trial methodology, which functions under a charter approved by the U.S. Food and Drug Administration (FDA) to review the accumulated data of Cynapsus’ clinical trial and to provide recommendations to the Company.    

“We are very pleased with the DSMB’s positive recommendations to assess an amendment to allow at-home dose titration in the CTH-301, six-month open label safety study,” said Anthony Giovinazzo, President and CEO of Cynapsus.

“This decision is based upon the positive safety signal seen during titration in the CTH-300 double-blind 12-week efficacy study. Allowing the trial to proceed with the modification for at-home titration is expected to make it more convenient for PD patients to treat their OFF episodes. We believe this change may assist with patient compliance and allow Cynapsus to assess results in a more real-world setting,” said Dr. Albert Agro, Chief Medical Officer of Synapses.

Phase 3 Program Study Design

The CTH-300 study is a double-blind, placebo-controlled, parallel-design, two-part study.  The study has enrolled eligible PD patients and 102 PD patients have entered the Open Label dose titration phase (DTP). In the DTP, patients arrived at the clinic in the practically defined OFF state (withholding their morning dose of PD medications) and received the lowest dose of APL-130277 (10mg). Patients were assessed to determine if successful conversion from OFF to full ON occurred. If a full ON was not achieved, patients returned to the clinic on subsequent visits and received a higher dose of APL-130277 (at 5mg increments, up to 35mg) until the effective conversion dose was identified. Those patients that turned fully ON with a dose of APL-130277 during the DTP proceeded to the dose randomization part of the study where they were randomized to receive either the effective dose or placebo. The objective of the second part of CTH-300 is to evaluate the efficacy, safety and tolerability of APL-130277 versus placebo in patients with PD over a 12-week period. CTH-300 is well powered to demonstrate statistical significant reduction in MDS-UPDRS Part III with 80 patients randomized. A sample size of 80 randomized patients allows for greater than 90% power to achieve statistical significance at the primary and key secondary endpoint. The primary endpoint is a mean change in the MDS-UPDRS Part III score at 30 minutes after 12 weeks of at-home dosing.

The CTH-301 Phase 3 Safety Study (CTH-301) is a long-term open-label, single arm safety study involving PD patients who have at least one OFF episode per day, with total OFF time of at least two hours per day. The objective of CTH-301 is to evaluate the safety and tolerability of APL-130277 in up to 200 patients with PD over a six-month period.  Patients completing CTH-300 are eligible to enter CTH-301. In addition, de novo patients from approximately 65 sites in North America and Europe will be enrolled in CTH-301.

Data from CTH-300 and CTH-301 are expected to form the basis for the registration package necessary for a 505(b)(2) New Drug Application (NDA) with the FDA expected to be submitted in the first half of 2017.

About Cynapsus 

Cynapsus is a specialty CNS pharmaceutical company developing and preparing to commercialize a fast-acting, easy-to-use, sublingual thin film for the on-demand management of debilitating OFF episodes associated with PD. The Company has successfully completed a Phase 2 clinical trial for its product candidate, APL-130277, a sublingual formulation of apomorphine hydrochloride, or apomorphine. Apomorphine is the only molecule approved for acute, intermittent treatment of OFF episodes for advanced PD patients, but is currently only approved as a subcutaneous injection in the United States. APL-130277 is a “turning ON” medication designed to rapidly, safely and reliably convert a PD patient from the OFF to the ON state while avoiding many of the issues associated with subcutaneous delivery of apomorphine. It is designed to convert all types of OFF episodes, including morning OFF episodes, often considered the most difficult to treat. Cynapsus has initiated its Phase 3 clinical program for APL-130277, relying on the abbreviated Section 505(b)(2) regulatory pathway in the United States, and the Company expects to submit an NDA in the first half of 2017. For additional company information, please visit our website at www.cynapsus.ca. For more information about the Phase 3 studies, including enrollment criteria, please visit the following website:  http://cth300and301trials.cynapsus.ca/

https://globenewswire.com/news-release/2016/08/15/864095/0/en/Cynapsus-Announces-Positive-Opinion-from-Data-and-Safety-Monitoring-Board-on-Phase-3-Parkinson-s-Disease-Clinical-Study-Allowing-for-At-Home-Titration.html

Do-It-Yourself Designs for Daily Living

Using a pool Noodle to Place your cards in

Those hair curlers work great

Using a tennis ball or a small tennis ball (sold in pet stores) to hold onto things.

These are a few things I have found to help make life a little easier without paying a fortune for items.

Event doesn’t let tragedy get the last word

The Sachem

By Tamara Botting 

Aug. 14, 2016

Marguerite Kelly and Larry Smith organized a concert and pig roast to benefit Parkinson’s Canada. Originally, the event had been planned to support Smith’s brother and Kelly’s friend, Frederick Smith. When Frederick passed away on July 3, the pair decided to proceed, and make the event a memorial tribute instead.

While Larry Smith had heard of Parkinson’s disease before, it wasn’t until his brother, Frederick, was diagnosed that he understood the impact it had on a person’s life.

“I didn’t really know anything about it. After, I realized how bad a disease it is,” Larry said.

Frederick was diagnosed five years ago.

“He never complained. He fought the disease every day,” said Marguerite Kelly, a friend.

To help support Frederick in his fight, friends and family planned a concert and pig roast for the first weekend in August. A number of area businesses and individuals also donated raffle prizes to help raise additional funds, with all proceeds going to Parkinson’s Canada.

Sadly, Frederick passed away on July 3 at the age of 66, a month before the event.

Rather than cancel, they decided to run the event as a memorial for Frederick instead.

“It’s what he would have wanted,” Kelly said.

Music had always been a part of Frederick’s life.

“We come from a musical family,” Larry said. He had his brother had played together in a band years ago.

“He was a blues player. His motto was, ‘We are blues people. Blues never lets tragedy have the last word,’” Kelly said.

Larry’s band, Fuzzy Dice, had been slated to play at the event. Rather than let the loss of his brother stop him from taking the stage, Larry turned his performance into a tribute.

He and Kelly are already talking about holding the event again next year.

“With more research, hopefully people with Parkinson’s can have a better life,” Larry said, adding, “I’d like to see it right off the face of the earth.”

“Parkinson’s is a progressive neurological disease. Once you get it, it just gets worse,” said Karen Dowell, community development coordinator for Parkinson Canada.

Some of the effects can include tremors, a change in a person’s speech or gait. People may also experience freezing of their lower body, so while they may be able to speak or move their hands and arms, they cannot get up or walk; this could last a few seconds, or hours. It’s possible that a person may lose the ability to show facial expressions, such as happiness.

Pain and fatigue are also associated with the later stages of the disease, as mobility becomes more of a challenge and muscles contract.

“It’s caused by a loss of dopamine, a chemical from the brain. Dopamine just diminishes as we age. There’s no cure yet. What we have is symptom relief through a synthetic replacement of the dopamine lost,” Dowell said.

However, the effectiveness of the treatment wears off within a few years.

“As the disease progresses, as your body gets used to the medication,” Dowell said.

While many may not be familiar with the disease now, it is becoming much more prevalent.

“Every hour of every day, someone in Canada is diagnosed with Parkinson’s disease,” Dowell said. With the nation’s large aging population, “that number still will increase.”

While the average age for the onset of Parkinson’s is 60, Dowell said that people as young as 30 are being diagnosed.

Dowell lauded Larry and Kelly for hosting the event to benefit Parkinson’s Canada. Besides the $1,200 that was raised for the not-for-profit organization, it was also a way “bring education to the community,” Dowell said, not only to help people with the disease recognize the signs for earlier diagnosis, but also others in the community so that they can have more understanding when interacting with people with Parkinson’s.

For more information about the disease, visit www.parkinson.ca.

http://www.sachem.ca/news-story/6808954-event-doesn-t-let-tragedy-get-the-last-word/

Romero named to Parkinson's board

Aug. 14, 2016

GARDNER - Gregory Romero of KE Tube, Inc. has been named an officer for the board of directors for the Parkinson's Foundation, based in New York City and Miami.

The Parkinson's Foundation represents a recent merger of the National Parkinson Foundation and the Parkinson's Disease Foundation. The Parkinson's Foundation will be governed by a board of directors that will include 11 members from each of the legacy organizations.

Mr. Romero, named secretary to the board of directors, is vice president of KE Tube, Inc., a manufacturer based in Gardner

https://article.wn.com/view/2016/08/14/Romero_named_to_Parkinsons_board/

Access is central to Maryland medical marijuana program

August 13, 2016 by Brian Witte

Plenty of states have rolled out medical marijuana operations before Maryland, but as the state prepares to announce its top candidates for licenses to grow and process the drug, it's determined not to repeat the mistakes of others.

Maryland takes one of the more liberal approaches toward medical marijuana access, and that's caught the notice of businesses that flooded regulators with more than 1,000 applications.

"It's failed in other states because they've been too restrictive about the kinds of diseases and ailments that could be utilized by physicians, and I think in Maryland they've taken the opposite approach, which generates the interest because they appreciate that Maryland is forward thinking on this," said Gerard Evans, a lobbyist for license applicant Holistic Industries.

Medical marijuana will be available for any condition that is severe in which other medical treatments have been ineffective, and if the symptoms "reasonably can be expected to be relieved" by marijuana. Patients with a chronic or debilitating medical condition that causes severe appetite loss, severe or chronic pain, severe nausea, seizures or severe muscle spasms also can have access, as well as people with glaucoma or post-traumatic stress disorder.

Even further, Maryland will allow not only physicians but nurse practitioners, dentists, podiatrists and nurse midwives to certify patients as eligible to receive marijuana.

"It's not only the broad spectrum of conditions and ailments that they've put out there, but also the broad spectrum of health care practitioners that can recommend it," said Angeline Nanni, CEO of CannaMED Pharmaceuticals, which has applied for a grower's license in Hebron on Maryland's Eastern Shore where the company already has invested about $1 million in a facility to grow and research marijuana.

Regulators have adopted best-industry practices for marijuana concentrates and cannabis-infused products. They also have implemented strict regulations regarding bona fide physician-patient relationships.

People authorized to recommend marijuana use will be able to do so for patients in other states who come to Maryland.

Twenty-five states and the District of Columbia have legalized a comprehensive medical marijuana program, according to the National Conference of State Legislatures. In Maryland, regulators are scheduled to announce on Monday which companies have received preliminary approval for licenses to grow or process marijuana.

The industry has struggled in some states. For example, Minnesota's two licensed medical marijuana manufacturers each posted millions of dollars in losses in their first year of operations, according to financial documents obtained by The Associated Press. Minnesota's program is only open to patients with 10 severe conditions.

Maryland approved its first medical marijuana law in 2013. The effort stalled, however, because it required academic medical centers to run the programs, and none stepped forward.

The law was changed in 2014 to allow doctors certified by the Maryland Medical Cannabis Commission to recommend marijuana for patients with debilitating, chronic and severe illnesses.

Medical cannabis is not expected to be available from Maryland dispensaries until sometime next year. The commission is expected to grant 94 dispensary licenses from 811 applicants later this year.

Troy Dayton of the San Francisco-based Arcview Group said interest in Maryland also is driven by the potential for full legalization later. Four states—Alaska, Colorado, Oregon and Washington, as well as the District of Columbia—allow marijuana possession in small amounts by adults over 21 for any reason. Medical and recreational marijuana sales in Colorado reached nearly $1 billion last year.

"Part of the reason I think why a lot of people want to get these licenses now is that they imagine that adult-use legalization will come sometime, and they will already have a brand and a market and customers and really have an advantage if the market shifts in Maryland," Dayton said.

For now, though, officials say the focus is on helping sick people, including children who meet their physician's criteria for treatment.

Harry "Buddy" Robshaw, the vice chairman of the commission, spent more than 40 years as a policeman, 15 of them as a narcotics investigator who used to put people in jail for using drugs.

"I have come to believe very strongly, though, that medical marijuana is going to be a savior for a lot of people in the state of Maryland, particularly kids," Robshaw said at a recent meeting this month.

http://medicalxpress.com/news/2016-08-access-central-maryland-medical-marijuana.html

Packing quite a punch: Parkinson’s patients box their way to strength

By Will Bellamy
Aug. 14, 2016

Carolyn “The Cunning Edge” Ashbaugh, right, ducks a punch thrown by Madeleine “Tiny Terror” Kenefick during a recent Rock Steady Boxing training session. The intensive exercise helps people with Parkinson’s disease, like these women, maintain balance, mobility and a heightened sense of well-being. Sue Cockrell/Enterprise photo

Melissa Tafoya takes an unconventional approach to helping those with Parkinson’s disease thrive in the face of adversity.

Tafoya, who will speak at the August meeting of Parkinson’s of Davis support group on Thursday, leads boxing classes intended to bolster the physical and mental well-being of people living with the neurodegenerative disease.

The classes fall under the umbrella of Rock Steady Boxing, a nationwide program originally created by a former prosecutor from Marion County, Indiana, in 2006. The program offers trainers like Tafoya the opportunity to earn certifications that enable them to teach Rock Steady Boxing classes at their local gyms.

During her classes at Capitol City Strength and Conditioning gym in Sacramento, Tafoya works to break down the techniques of boxing into movements that her fighters can master more easily.

According to the National Parkinson Foundation, intensive exercise plays a critical role in maintaining the balance and mobility of individuals diagnosed with the disease. It also can reduce the risk of falling and provide a heightened sense of well-being.

In addition to the benefits of exercise itself, Tafoya said she also has seen the positive impact of community on participants. The camaraderie she witnessed while observing a Rock Steady Boxing program in San Francisco influenced her decision to obtain certification.

“It was incredible to see the passion not only from the coaches, but also the members,” she said. “There was a real sense of strength.”

Tafoya originally earned a bachelor of science in applied art and design from Cal Poly and worked for seven years in graphic design. Along the way, she tried a variety of sports, including running and mixed martial arts. However, boxing stood out to her more than anything due to the impact of the sport on her motor skills, peripheral vision and other facets of her life.

Eventually, she decided to begin pursuing certifications in functional training. Today, she is a National Academy of Sports Medicine-certified personal trainer and corrective exercise specialist with certifications in both TRX suspension training and Rock Steady Boxing.

“I needed to keep moving and I liked being connected with people quite a bit,” she said of her change in career.

Tafoya also has participated in two TRX competitions and she took first place in the women’s division of the 2014 TRX Trainer Summit 40/40 Challenge.

During her speech at the Parkinson’s of Davis support group meeting Thursday, Aug. 18, Tafoya will discuss her classes and take questions on the RSB program. Additionally, several of her fighters will shadow-box and showcase the various movements that they have learned, as well as the military-style cadence chant with which they begin their classes.

Three participants from her classes — Madeleine “Tiny Terror” Kenefick, Carolyn “The Cunning Edge” Ashbaugh and Jack “Jumping Jack Flash” Goldberg — hail from Davis.

The Parkinson’s of Davis meeting is scheduled to begin at 1:30 p.m. at the Davis Senior Center, 646 A St. All are welcome.

http://www.davisenterprise.com/local-news/parkinsons-patients-box-their-way-to-strength/

Dozens take stroll at Ontelaunee Orchards in battle against Parkinson's

By Karen Shuey
Aug. 14, 2016

For those living with Parkinson's disease such as Blandon resident Doug Nemeth, each day is a surprise. Will it be a good day - with less tremors and more energy - or a bad day - with decreasing mobility and increasing depression?

Saturday turned out to be a pretty good day for Nemeth.

That's due in large part to the support he received from family, friends and strangers who showed up to the inaugural Ontelaunee Orchards' Peach for a Cause Parkinson's Walk at the business near Leesport.

The fundraiser is the first step forward in bringing awareness to the challenges of those battling the progressive disorder and the therapies being developed to help combat the disease.

"It's wonderful to see this kind of support," Nemeth said as he watched about 60 people start off on their journey through the orchard. "You can't imagine how humbling it is to know so many people want to get behind this cause. It means a lot."

Nemeth, vice president of Ontelaunee Orchards, was diagnosed with Parkinson's disease 11 years ago when he was just 49.

Parkinson's disease attacks the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But, while a tremor may be the most well-known sign of Parkinson's disease, the disorder also causes stiffness or slowing of movement. The symptoms worsen over time.

"It's a horrible disease because it slowly takes away your ability to take care of yourself," said walker Janet Colflesh, a Leesport resident who saw her mother and father struggle with the disease before passing away. "No one knows what causes it so there's no way to know if I'm more at risk than someone else. But I worry about it everyday."

Parkinson's disease affects more than 1 million Americans, with about 60,000 cases diagnosed annually.

Although the disorder cannot be cured, medications can improve symptoms. Researchers and scientists are working to develop protective drugs that can delay, prevent or reverse the disease.

'An inspiration'

Stacey Mullen, the manager of retail operations at the orchard, organized the event.

Each participant contributed $20 to benefit Parkinson's Unity Walk, which donates to the American Parkinson Disease Association, the National Parkinson Foundation, the Parkinson's Action Network, the Parkinson's Disease Foundation, The Michael J. Fox Foundation for Parkinson's Research, The Parkinson Alliance and The Parkinson's Institute and Clinical Center.

"This is something that is near and dear to our hearts," she said. "To see Doug run this company while he's battling this horrible disease has been an inspiration."

Nemeth credited the people around him, particularly his wife, for providing a steady foundation.

He said their support gives him the lift he needs to get through his darkest days. Up to 60 percent of people with Parkinson's disease experience mild or moderate depression.

In fact, Nemeth said that research suggests that the disease itself causes chemical changes in the brain that can lead to depression since it affects parts of the brain that are important in controlling mood.

Dan Noll, a Blandon resident who brought his family to the event, saw his father experience some of those same symptoms out of frustration over losing his mobility and ability to communicate.

"Parkinson's disease affects different people in different ways," he said. "It was very hard to see what it did to my father. The hardest part for him came toward the end when he couldn't express himself anymore. It was like he was trapped in there."

His father, Leonard D. Noll Sr., passed away on Tuesday.

"We planned to do this walk as a family a few weeks ago but his death made it more of a tribute to him," he said. "It's something small but it has a lot of meaning for us."

Contact Karen Shuey: 610-371-5081 or kshuey@readingeagle.com.

http://www.readingeagle.com/news/article/dozens-take-stroll-at-ontelaunee-orchards-in-battle-against-parkinsons