Michael Hausman

“The CPIRF Board of Directors is comprised of some of the most fascinating, caring and accomplished individuals who happen to either have cerebral palsy (CP), have a family member with CP or have learned about our organization from someone in the former or latter categories,” said CPIRF CEO and President Glenn R. Tringali.

One such board member is Michael Hausman who had a brother with CP, had parents who were the founders of our Foundation, and who has made a career of film production for nearly four decades. Hausman’s acclaimed film credits include Brokeback Mountain, Gangs of New York, The People vs. Larry Flynt, Silkwood, Amadeus and The Heartbreak Kid. In this capacity, Hausman has worked with such renowned directors as Milos Forman, David Mamet, Mike Nichols, Martin Scorsese, and Ang Lee.

Recently, Hausman received an Emmy award for HBO’s Recount and also produced the Phil Spector Biopic on HBO with Al Pacino. Hausman has been First Assistant Director and Production Manager on many films, including several which he produced. In an article about him on the Director’s Guild of America website, Hausman was described as someone who “has straddled the front and back office worlds of films as few others have.”

Michael Hausman’s connection to CP is his brother Peter, who passed away in 1991 and was the inspiration for parents Jack and Ethel to join forces in 1948 (when Peter was a teenager) with Leonard and Isabelle Weinstein Goldenson to found the United Cerebral Palsy Foundation (UCPA) because there was inadequate health care available to the thousands of babies and children with birth defects. Later in 1955, the same founding families of UCP created the UCP Research and Educational Foundation, now known as Cerebral Palsy International Research Foundation (CPIRF).

In honor of the founders, the Ethel & Jack Hausman Clinical Research Scholars Award was subsequently created to assist U.S. institutions to foster promising clinician-investigators early in their careers and to help in their establishment as independent researchers in areas of direct relevance to cerebral palsy.

“We are delighted that Michael Hausman is carrying on his family’s legacy with our organization,” said Tringali. “Having grown up with a sibling with CP puts  Michael in the position of understanding the needs of families and individuals with CP first-hand. His storied career makes him a fascinating person to speak  with and demonstrates that CP touches the lives of everyone.”

Hausman splits time between his New York City home and business Filmhaus and Cinehaus Inc., and his buffalo ranch in Montana. Prior to his film career Hausman was a Merrill Lynch stockbroker. He has taught graduate film students at Columbia University for 30 years and graduated with a B.A. from Cornell in 1957.

Finn Kelly is all smiles after the race

Recently, one family and its supporters made a great impact on the future of cerebral palsy research on behalf of its youngest family member, 8-year-old Finn Kelly. The Sleepy Hollow Half-Marathon on March 23 was the location for the first annual “Find a Cure for Finn” Fundraiser, spearheaded by Finn’s oldest siblings, 17-year-old Dillon and 15-year-old Tatum Kelly. Parents, Tim and Ellie Kelly of Rye, New York, son Dillon, and 9 other family members and friends set off on a 13.1 mile race, ultimately raising $37,255 for the Cerebral Palsy International Research Foundation (CPIRF). With two miles left in the marathon, Finn’s sisters Tatum, 15 and Shane 10, jumped in to run alongside their parents and older brother Dillon. At that point, Tim and Ellie also grabbed Finn in his stroller, running with him to the finish line. There were 75 Team Finn supporters in all, cheering loudly along the sidelines.

The inspiration behind the fundraiser, Finn Kelly, suffered a brain injury when he was born 11 weeks premature, and was diagnosed with cerebral palsy in infancy. Because he is non-verbal and non-ambulatory, the Kelly’s wanted to give Finn a “voice and wheels” through their participation in the half-marathon.

The Kelly family being interviewed by the local TV station, following their 13.1 mile race, in which they raised over $37,000 for the Cerebral Palsy International Research Foundation. Surrounding Finn (in jogging stroller) are from left: Tatum, Tim, Shane (in front of her dad), Ellie and Dillon

“This wonderful, caring family has presented CPIRF with the funds to enable cutting-edge research for treating, preventing and finding a cure for cerebral palsy (CP),” said Glenn R. Tringali, CEO and President of CPIRF. “We are incredibly grateful for the Kelly’s generosity. The CP research community increasingly counts on CPIRF’s financial support. Our ability to provide funding for additional, innovative research has become more urgent than ever before,” he added.

According to Finn’s mom Ellie, “We chose CPIRF as the recipient of our first annual fundraiser with the hope that our research investment can someday lead to a cure. I’m gratified that our family is able to help support and advance CPIRF’s important research initiatives and help others. We’re already planning next year’s fundraiser for the Foundation,” she added.

Elena Delle Donne while playing for the University of Delaware

Elena Delle Donne, former All American star basketball player from the University of Delaware and current member of the WNBA professional women’s basketball team, Chicago Sky, is spreading the word with CPIRF about an NIH-funded study for children ages 2 to 12 with spastic cerebral palsy by Dr. Christopher M. Modlesky of the University of Delaware. Delle Donne has an adult sister Lizzie who lives with cerebral palsy (CP).

“A former recipient of CPIRF funding, we are happy to help Dr. Modlesky get the word out about this important study,” said CPIRF CEO and President Glenn R. Tringali. “We are also excited to have Elena Delle Donne lending her name and assistance to help us recruit families who will benefit. A very impressive young woman, Elena Delle Donne is the number two pick overall in the recent WNBA draft. Despite her hectic schedule, her loyalty o Delaware, where this research study will be conducted, and her commitment to her sister are truly admirable and will go a long way towards forwarding research efforts for improving the lives of individuals with cerebral palsy.” Tringali added.

From left with the family dog are Elena Delle Donne and siblings Gene and Lizzie

The study, which will take place at the AI DuPont Hospital for Children in Wilmington and the University of Delaware in Newark, will examine the effect of Botox and the low level use of vibration on muscle tone, bone and physical activity in children with spastic CP. For more details about the study criteria, visit http://tinyurl.com/bvketpt.

CPIRF Board Member, Rich Donovan

CPIRF board member Rich Donovan, CEO of Fifth Quadrant Analytics, NYC,  is a key contributor to a pioneering business school case study profiling the disability market for Columbia Business School, Donovan’s alma mater. His schooling, business acumen, and Donovan’s personal experience as an individual with Cerebral Palsy, have made him a world-renowned expert in the convergence of people with disabilities and corporate profitability. His work enables companies to transform disability compliance into an opportunity to innovate, grow and drive profitability. This particular case study teaches students about insights and innovation in the retail space inspired by people with disabilities. “Rich’s contributions to Columbia Business School, to our organization and to the larger disability community are immeasurable” said CPIRF CEO and President Glenn Tringali.” More details follow:

Fifth Quadrant Analytics

Columbia Business School Releases Case on Disability Market 

New York, NY - April 9, 2013 -  Columbia Business School has produced a pioneering business school case study profiling the disability market. The case examines how large global brands can create value by engaging people with disabilities (PWD) as consumers and Lead Users that drive innovation for all. Columbia CaseWorks engages Columbia Business School faculty to develop cases and teaching tools for use in Columbia classrooms and in business schools throughout the world. Olivier Toubia, the Glaubinger Professor of Business, developed this case in conjunction with Fifth Quadrant CEO Rich Donovan and graduate student Nithya Ramon to illustrate the “Lead User Method” in market research. The case is available to schools and businesses globally as a tool to frame a new market and approach innovation from a new perspective.”This is an excellent example of leaders in business and education coming together to provide insight and rigor to the disability market.” said Fifth Quadrant Analytics CEO Rich Donovan “Congratulations to Columbia Business School for blazing a trail for others to follow. “The case abstract is on the CaseWorks site here - faculty at accredited universities may register on the site; all others may obtain a sample version of the case by contacting CaseWorks directly at ColumbiaCaseWorks@gsb.columbia.edu.

Abstract

In early 2012, supported by a seed grant from PepsiCo, Nithya Raman, then a masters student in marketing at Columbia Business School (CBS), partnered with Rich Donovan, CBS ’02, a world-renowned expert in the convergence of PWD and corporate profitability. Together, they framed a lead user study to gain PWD-inspired insights into innovation in the retail space. In this case, students learn of past applications of the lead user method to achieve breakthrough innovation and the step-by-step process by which Raman framed and carried out her study.

About Fifth Quadrant Analytics

Fifth Quadrant Analytics’ Return on Disability Ratings Reports helps companies understand their performance across disability factors that are linked directly to profitability. In addition to rating reports, Fifth Quadrant Analytics’ produces the Return on Disability Indices for the U.S. and Canada markets. These equity indices recognize public companies that are outperforming in the disability market. The RoD US 100 and the RoD Canada 50, are published daily by Bloomberg LP.

About Columbia CaseWorks

Columbia CaseWorks develops teaching cases and materials for use in Columbia Business School classrooms. All material is closely tied to and based on the research and expertise of Columbia’s world-class faculty. The program leverages the energy, creativity, and intellectual capital of the School and provides a bridge between theoretical and practical business knowledge. Columbia CaseWorks provides funding and staff support for the development of new cases and teaching materials.

A simple device invented by Johns Hopkins students could, with the help of a Canadian grant, become a lifesaver in the developing world.

The “Cooling Cure” is an inexpensive basket in a clay pot that allows for the cooling of oxygen-deprived newborns to dramatically lower the risk of cerebral palsy. Photo courtesy of Johns Hopkins University.

Putting a baby inside a flower pot is generally not a good idea, no matter how adorable it might look on Instagram. But a group of Canadian neuroscientists and a team of creative undergrad students in the U.S. are convinced it could be just the trick for saving millions of newborn lives.

Using simple, relatively cheap items, including a clay pot, a burlap basket, sand and triple-A batteries, biomedical engineering students at Baltimore’s Johns Hopkins University invented a low-tech, $40 device to cool oxygen-deprived babies at birth, potentially sparing them from cerebral palsy or even death. It’s a device that Canada’s top brain doctors say could be a game-changer in developing nations that can’t afford the $12,000 baby-cooling equipment found in advanced hospitals.

So what started out as a credit for a class project is now being considered for a quarter-million-dollar grant from Grand Challenges Canada, a federally funded, not-for-profit organization “dedicated to supporting bold ideas with big impact in global health.”

The Johns Hopkins students’ “Cooling Cure” has shown promising results in animal trials, reducing the body temperature of piglets by the required three degrees to the point of hypothermia, at which point they are stabilized and then gradually rewarmed to a normal core temperature. It’s the same concept used in high-tech — and expensive — cooling devices.

The original prototype used two clay pots, one inside the other. The interior pot held the piglet dry while the space between the outer and inner pots was packed with a mix of sand, urea-based cooling powder and water.

The device works on the principle of evaporative cooling: Water slowly evaporates through the outer pot’s porous surface, drawing heat out of the inner pot so that the baby nestled inside it is gradually cooled down.

Dr. Michael Shevell, pediatrician-in-chief at the McGill University Health Centre, is so excited about the device that he wrote the grant proposal himself when he heard about the project from an American colleague.

“It could change the world by reducing the incidence of cerebral palsy in underdeveloped countries by approximately 40 per cent,” said Dr. Michael V. Johnston, a Johns Hopkins neurology professor who advised the students.

Johnston and Shevell met through a Canadian group called NeuroDevNet, a network of researchers who study children’s brains. Johnston, who sits on the group’s scientific advisory board, was telling his peers about the invention when, as Shevell explained it, “light bulbs went off.”

About four million children around the world, most in poorer countries, are born each year oxygen-deprived. The condition, called asphyxia, can occur when the umbilical cord is knotted, generally as a result of anemia, maternal malnutrition or unskilled delivery. If the baby survives, it may suffer brain-damage disorders such as cerebral palsy.

Scientists have discovered that gradually cooling the newborn within the first six hours, effectively reducing brain inflammation, can significantly lower rates of mortality and long-term disability. Most major health-care centres in North America have neonatal intensive care units that provide high-tech, controlled cooling.

But in places like South Africa, Egypt and Uganda doctors often have only fans, ice blocks and cold water bottles, which can end up doing more harm than good.

Last August, student John J. Kim, one of the Cooling Cure’s inventors, visited hospitals in India to get feedback on the device. Doctors in Mumbai and Pune suggested replacing the interior clay pot with a more durable, less expensive burlap basket lined in plastic, which Kim has since done.

The refined device includes two thermal probes connected to a microprocessor running on two triple-A batteries, which track the baby’s skin and internal temperature. If the baby is too hot, an LED light flashes red, signaling to a health care worker or family member to add water to the sand to help cool the child. If the light flashes green, the baby is too cold, and the caregiver should lift up the child.

“It’s made to be simple and it’s made to be used, under direction, by the (baby’s) family,” said Johnston, who is also chief medical officer of the Kennedy Krieger Institute, a Baltimore centre that helps children and adolescents with disorders of the brain, spinal cord and musculoskeletal systems.

A grant from Grand Challenges Canada would allow the Johns Hopkins students to begin human clinical testing in Bangladesh and India. A group will be visiting the countries this summer to meet with health officials and discuss plans to construct the cooling devices locally.

Grand Challenges Canada will announce the grant recipients of its Saving Brains Program in May.

SDR was first described in the medical literature more than 100 years ago but was largely forgotten until the 1960’s when it was modified and popularized, first in France, Italy, and South Africa, then subsequently in North America.

Normally, when a muscle is stretched, sensors in that muscle detect this change and inform a pool of nerve cells in the spinal cord via sensory nerve fibers. An immediate reflexive response is sent back to the muscle causing it to contract. This is a safety mechanism to prevent overstretching of the muscle, much like the rapid withdrawing of a hand when a hot stove is touched. The brain dampens this reflex so that the muscles are not overly sensitive to changes in movement. However, in the spastic type of cerebral palsy, the inhibitory input from the brain to the spinal cord is reduced resulting in high muscle tone and muscles that are overly reactive to stretch and movement. This leads to difficulties with walking, reaching, and self-care as well as joint contractures.  SDR interrupts the excessive flow of nerve impulses to the muscles that causes stiffness and over-reaction to stimulation and position changes.

In SDR, the neurosurgeon gains access to the sensory fibers going into the dorsal (back) side of the spinal column. About 50-70% of the nerve roots are cut, often guided by response of certain nerve roots to electrical stimulation. By cutting these nerve roots, the amount of sensory stimulation coming from the muscles into the spinal cord is reduced, thereby reducing the degree of reactive muscle contraction and, therefore, spasticity.

There is marked variability with SDR across surgical centers and among neurosurgeons in patient selection, operative procedures, complications, and in immediate and long term follow-up care. While most agree that the best candidates for SDR are individuals with spastic diplegia (predominantly high tone in the lower extremities), some surgeons have expanded the procedure to include those with quadriplegia (high tone in upper as well as lower extremities). Individuals with the dystonic type of CP (sustained muscle contractions with twisting and repetitive movements) are not candidates for SDR.

Determination of which and how many nerve roots to cut, how to gain access to the nerve roots and at what spinal cord levels, can vary markedly from medical center to medical center. These decisions can affect the type and degree of post-operative discomfort and complications that occur. Some patients go home very quickly after the procedure; others remain hospitalized for several weeks. Weeks of recuperative physical therapy are required to overcome weakness and to regain (and hopefully attain new) mobility capabilities.

Studies of SDR, though limited because of the variability of surgical techniques and outcome measures, have generally been positive. The procedure clearly reduces spasticity and improves range of movement in the lower extremities. For most individuals, there is better sitting and walking ability, improvements in self-care and performance of activities of daily living, some improvement in upper limb use, and sometimes a reduced need for orthopedic surgery.

Fortunately, serious complications from SDR have been rare. Because the operation requires disruption of sections of the spinal column, there appears to be a possible increased risk of spinal deformity (such as scoliosis or twisting of the spine) resulting from SDR in a population already at high risk for this problem, especially among those with spastic quadriplegia.

Dr. Hurwitz at the University of Michigan evaluated medical outcomes, interventions, satisfaction with life and subjective impressions about SDR in older adolescents and adults who underwent the procedure as children. He found that the majority of adults would recommend SDR to others. Very few reported negative impressions of the procedure. Levels of satisfaction with life were generally high. However, despite the SDR, additional surgical and nonsurgical interventions were necessary in the majority of patients.

Although SDR has typically been performed on children with CP, there is some experience with the procedure in adults. Dr. Matthew Reynolds at the St. Louis Children’s Hospital published a report on adults with spastic diplegia. In a short term follow-up, patients reported less spasticity and improved ambulatory ability, coordination, joint range of motion, and independence.

The following are recommendations for those considering SDR for their child with spastic CP or for themselves.

• Once SDR is mentioned as a possible option for yourself or your child, prepare for a discussion of SDR by reading about its rationale, selection process, operative procedures, complications, and outcomes from outside sources so that you are ready to ask detailed questions about a particular center’s methods.
• Consider a center with an experienced, interdisciplinary diagnostic and management team that might include: neurosurgeon, orthopedic surgeon, physical and occupational therapists, orthotist, developmental pediatrician, pediatric neurologist, and physiatrist.
• Ask about details of the procedure at this center and how they might differ from other centers, expected post-operative course, length of hospitalization, and type and extent of physical and occupational therapies, cost and insurance coverage.
• Ask whether and why you or your child fit the candidate criteria for SDR.
• Ask about other treatment options and why SDR is indicated at this time. What are the expected outcomes specifically for you or your child? Take time to consider alternative options.

Sources

1. Hurvitz EA, Marciniak CM, Daunter AK, et al. Functional outcomes of childhood dorsal rhizotomy in adults and adolescents with cerebral palsy. J Neurosurg Pediatr. Published online February 8. 2013.
2. McLaughlin J, Bjornson K, Temkin N. Selective dorsal rhizotomy: Meta-analysis of three randomized controlled trials. Dev Med Child Neurol 2002;44:17-25.
3. Nordmark E, Josenby AL, Lagergren J, et al. Long-term outcomes five years after selective dorsal rhizotomy. BMC Pediatr 2008;8:54-69.
4. Reynolds MR, Ray WZ, Strom RG. Clinical outcomes after selective dorsal rhizotomy in an adult population. World Neurosurg 2011;75(1):138-144.
5. Steinbok, P. Selective dorsal rhizotomy for spastic cerebral palsy: A review. Childs Nerv Syst 2007;23:981-990.
6. Tedroff K, Lowing K, Jacobson DNO, et al. Does loss of spasticity matter? A 10-year follow-up after selective dorsal rhizotomy in cerebral palsy. Dev Med Child Neurol 2011;53:724-729.

Join the leadership team of the Weinberg Family Cerebral Palsy Center at Columbia University and United Cerebral Palsy of NYC for a one-day conference dedicated to an in-depth examination of the environmental, physical and communication challenges that accompany Cerebral Palsy and complex care patients into adulthood.

This conference will provide a core curriculum for the Specialty Care Management of patients with Cerebral Palsy and will present updates in specific specialty areas of Stem Cells, Urology, Oral Health and Pain Management.

At the conclusion of the activity, participants will be better able to:

• Recognize manifestations/types of Cerebral Palsy
• Summarize and apply the GMFCS scale
• Discuss challenges to expect during the exam (physical, cognitive, communicative)
• Define and address barriers to effective care in complex patients
• Recognize the correct coding that is essential to building a Cerebral Palsy registry

Morning Session Core Curriculum for Providers only:  8:00 am – 12:30 pm

Afternoon Session for Providers and Families:  1:00 pm – 5:00 pm

Location:

Naomi Berrie Diabetes Center at Columbia University
1150 St. Nicholas Avenue at 168th Street, Main Level
New York, NY  10032

Parking is available at a fee.

This Conference will be Streaming Live and Archived for Future Views – On-line Registration Required. Seating is limited, so register today.

Providers: $100  (lunch is provided for morning session participants)
Non-Clinical Patients and Family Members:  $30

Register by mail. Send your check made payable to Columbia University.

Memo Line:  Weinberg Family CP Center
Include your contact info to reserve your seat. Indicate morning and/or afternoon sessions.

Mail to:
Weinberg Family Cerebral Palsy Center
3959 Broadway, Suite 8 North
New York, NY  10032
Phone:  212-305-2700
Email:  mb2581@columbia.edu

Morning Session

Who Should Attend:  Medical/surgical specialists, medical students, residents, physical and occupational therapists, and orthotists.

The morning session is devoted exclusively to Specialists who wish to learn how to maximize their ability to perform thorough exams for their patients with Cerebral Palsy. Speakers will provide an in-depth understanding of the environmental, physical and communication challenges that accompany Cerebral Palsy and complex care patients into adulthood.

Faculty  

Joseph P. Dutkowsky, MD, Associate Medical Director, Weinberg Family Cerebral Palsy Center
David P. Roye, Jr., MD, Executive Medical Director, Weinberg Family Cerebral Palsy Center
Vincent Siasoco, MD, MBA, Medical Director, United Cerebral Palsy of New York City

Afternoon Session

Who Should Attend: Medical/Surgical Specialists, Medical Students, Residents, Physical and Occupational Therapists, Orthotists, Patients, Family Members and Caregivers

The afternoon session is packed with speakers bringing updates for physicians, clinicians, caregivers, family members and patients.  Guest speakers include Stem Cell expert Dr. Michael Fehlings and Pain Management expert Dr. Darcy Fehlings.  Other topics selected to improve health and understanding of co-morbidities are:  Urology, Oral Health and Hip Disease.

Faculty  

Andrew Combs, RPA-C, Pediatric Urodynamics
Gregory Bunza, DDS, Dentistry
Darcy Fehlings, MD, Developmental Pediatrics
Michael Fehlings, MD, Neurosurgery
Joshua Hyman, MD, Pediatric Orthopaedics

Accreditation Statement:

This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the College of Physicians and Surgeons of Columbia University and United Cerebral Palsy. The College of Physicians and Surgeons of Columbia University is accredited by the ACCME to provide continuing medical education for physicians.

AMA Credit Designation Statement:

The College of Physicians and Surgeons designates this live activity for a maximum of 7.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Occupational Therapists CEU: A certificate of attendance for up to 7.5 contact hours of educational activity will be awarded to registrants upon completion of the seminar.

Orthotists CEU: This program has been approved for up to 6.5 credits through the American Board for Certification (ABC).  Full participation in this program is required to be eligible for the full amount of credits.

Physical Therapists CEU: Columbia University is approved by the New York State Education Department’s State Board for Physical Therapy as an approved provider of continuing education for physical therapists and physical therapist assistants. A certificate of attendance for 7.5 contact hours of educational activity will be awarded to registrants upon completion of the seminar.