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.

The cerebral palsy and rehabilitation therapy community lost one of its most revered and influential  individuals with the passing of Dr. Jacquelin Perry at the age of 94 on Monday, March 11, 2013. Dr. Perry was one of the early pioneers and champions of gait research and a past recipient of CPIRF’s Isabelle and Leonard H. Goldenson Award in Technology. Dr. Perry remained active in the field of gait research therapy right up until the time of her death. She was a legendary figure whose important work will continue to live on and benefit so many others.  

At the Foundation’s January 24, 2013 meeting, CPIRF installed three new board members, Eric J. Hespenheide, James Paul Volcker and Jean-Louis Lelogeais. According to Board Chairman Bill Richards, “all three individuals were voted in by unanimous decision, and we are delighted to welcome them to our organization.” Glenn Tringali, president and CEO of CPIRF added, “Eric, Jim and Jean-Louis all have a strong commitment and connection to the Cerebral Palsy community, as well as very impressive business experience. We look forward to working together to forward the mission of our organization.”

Eric J. Hespenheide

Eric J. Hespenheide has a long history of involvement in the Cerebral Palsy community. He has served as a board member for the United Cerebral Palsy Association on the local, state and national levels, including positions as National VP of Finance and Chair of the National Audit and Nominating Committees.

Professionally, Mr. Hespenheide serves as the Global Leader of the Deloitte Touche Tohmatsu Limited (DTTL) member firm’s Sustainability group within Audit and Enterprise Risk Services. He is a CPA, a member of the Institute of Internal Auditors and a former Vice President, Strategy, and Board of Trustees member for the Institute of Internal Auditors Research Foundation.

Mr. Hespenheide has served numerous global companies during his 35 year career, providing accounting and auditing services across multiple industries. He is a frequent speaker and author on the topic of sustainability, particularly related to reporting and assurance matters, and serves as the engagement leader with a number of companies providing both advisory services and assurance services in the US and internationally.

Mr. Hespenheide is a graduate of the University of Detroit Mercy with a BS in Business Administration and is a member of the Dean’s Advisory Council, Louisiana State University and University of Detroit Mercy.

Jean-Louis Lelogeais

Jean-Louis Lelogeais has a personal commitment and connection to the Cerebral Palsy community. He has an adult daughter with Cerebral Palsy, and holds a special interest in the topic of mental health issues in CP, as well as family issues and aging with CP.

Mr. Lelogeais is Co-Founder and Senior Managing Director of Strategic Value Partners (SVP), LLC, based in Greenwich, CT. He is a member of the Investment Committee and has been responsible for strategic relationships at the firm, since 2001. During his professional career he has acquired significant experience across corporate banking and capital markets businesses and in turnaround and growth strategies with Moore Strategic Value Partners, Chase Manhattan Bank,  and in his own advisory firm, Lelogeais & Co., LLC, as well as in the position of Partner with Booz Allen Hamilton.

Prior to beginning his career in 1985, Mr. Lelogeais earned a Masters of Engineering degree from Ecole des Mines in France and an M.S. in Management Sciences from the Massachusetts Institute of Technology.

Jim Volcker

James Paul Volcker, son of honorary, immediate past CPIRF Chairman Paul A. Volcker, is featured on a CPIRF video with his father speaking about growing up with Cerebral Palsy. He was the inspiration behind his Dad’s tenure as Board Chairman for CPIRF and now continues to carry the mantle by becoming a board member in his own right.

Mr. James Volcker is a Departmental Grants Management Specialist for the Department of Biostatistics and Computational Biology for Dana-Farber Cancer Institute in MA. During his tenure at Dana-Farber Cancer Institute, since 2008, he has earned a Quarterly Impact Award and Employee of the Year Award. Previously he was Grant Officer for the Office of Sponsored Programs for Boston Children’s Hospital. Since 2001, Mr. Volcker has amassed expertise in the review, approval and submission of grant applications to federal and private sponsors in partnership with investigators and administrators.

Prior to his work in grant administration, Mr. Volcker held several positions in the banking field, including 7 years as Corporate Planning Officer and Assistant Treasurer with National Westminster Bancorp in Jersey City, NJ. He is a graduate of New York University with a Master of Public Administration in Health Finance, and a Bachelor of Arts in Economics.

“Our Foundation is fortunate to welcome three individuals of such caliber to our Board of Directors,” said Mr. Tringali.

Highlights from the January 24, 2013 Board meeting Research Summary Presentation to new and returning board members were “numerous and enlightening,” according to new Board Chairman Bill Richards, himself a father of a grown son with CP. The presentation covered where the field of CP and CPIRF research has been, where it is now, and outlined the unique opportunities for the 21st century.

Leading the presentation were Dr. Peter Rosenbaum, Chairman of the CPIRF Scientific Advisory Council and Professor of Pediatrics at McMaster University and Dr. James Blackman, CPIRF Medical Director and Professor of Pediatrics Emeritus, University of Virginia.

Expanded Family & Lifespan Focus

In commenting on how the focus in the field has changed to the family, rather than solely the individual with CP, Dr. Rosenbaum commented that a 2-year-old doesn’t say, “I’m worried that I don’t walk well.” The worries are on the part of the parents. Today’s doctors are engaged with the whole person and the entire family to help individuals with CP to have a full, meaningful life. Studies are underway to encompass every aspect, from the caregivers’ physical health to the adults with CP who have chronic pain. “There are three times as many adults with Cerebral Palsy than children, but most of the medical community focuses on kids,” said Rosenbaum. “We are expanding our focus to cover the entire lifespan and all related social and environmental issues.” For example, mental health challenges that can accompany Adult CP are being studied. (See Dr. Blackman’s most recent column in From the Medical Director’s desk, about CP and mental health issues.)

Better Understanding Leads to More Focused Treatment

Dr. Rosenbaum additionally discussed how the words “mild, moderate, severe and normal are awful words that should be expunged, “and how the CP community is moving forward in using a more humane common language numbering system to describing varying CP abilities. Research and better understanding of the different types of CP has also allowed the medical community to stop treating the entire community with a broad brush. For example, better understanding the specific types of CP has allowed us to stop x-raying 60% of children with CP for whom hip dislocation is not a significant risk.

Breaking Ground from Robotics to Gene and Brain Studies

From researching genes to the use of robotics, to helping Middle East children with CP navigate walking on rough terrain, “CPIRF is breaking ground in research studies and resulting treatments around the world,” according to Dr. Blackman.

The speakers reviewed the Kinect project, an optical reader for gaming that assesses motor ability of the gamer with physical disabilities and adapts accordingly. Deep brain stimulation is another area of research that brings great promise. Deep Brain Stimulation (DBS) is a neurosurgical technique whereby electrodes are implanted deep within the brain to control involuntary movements.  CPIRF is coordinating an international study of the possible benefits of DBS in certain types of CP with dystonia.

The meeting closed with CPIRF CEO Glenn Tringali noting that there is no other non-governmental organization in the United States solely focused on CP research. “We take our responsibility to the CP community very seriously and look forward to continuing to share and celebrate our progress with families, scientists and the medical community.”

From Left, Paul A. Volcker recognizes James C. Stearns, CPIRF Exec. Comm. Chairman & past President, and Dr. Murray Goldstein, former CPIRF Medical Director

At the January 24, 2013 CPIRF board meeting, a formal resolution was passed establishing that the first two research grants awarded annually by the Foundation, in the amount of $50,000 each, will be separately named in honor of James C. Stearns and Dr. Murray Goldstein, for their 20 years of leadership with CPIRF.

According to CPIRF CEO Glenn Tringali, on September 27, at the dinner honoring immediate past CPIRF Chairman, the honorable Paul Volcker, Mr. Volcker initially announced a substantial gift for the purpose of funding these annual awards. “Our sincere thanks go out to Mr. Volcker,” said Mr. Tringali.

The awards recognize the significant contributions and achievements made by Mr. Stearns and Dr. Goldstein to the Cerebral Palsy community since their work with CPIRF began in 1993.

James C. Stearns served as President of CPIRF from 2004 through 2011, and has served as a member of the Board of Directors since 1993. He currently serves as Chairman of the Executive Committee. “His leadership has been and continues to be invaluable to our organization and the larger CP community,” said Mr. Tringali.

Dr. Murray Goldstein served as the Medical Director and Chief Operating Officer of CPIRF between 1993 and 2003 and as Chairman of the Scientific Advisory Council of CPIRF from 2005 through 2011. “During his tenure, Dr. Goldstein has provided tremendous leadership and guidance in reviewing scientific research proposals and recommending scientific research projects to be funded by CPIRF,” said Mr. Tringali.

Dr. Goldstein and Mr. Stearns expressed their deepest appreciation for the honor bestowed on them.

Dr. Peter Rosenbaum, Scientific Advisory Council (SAC) Chairman for CPIRF, has co-authored a new book, Cerebral Palsy: From Diagnosis to Adult Life with Dr. Lewis Rosenbloom.

This 224-page paperback is dedicated to family members and caretakers of children with cerebral palsy, as well as adults with CP, doctors and therapists. Cerebral Palsy: From Diagnosis to Adult Life details the nature of CP, its causes and clinical manifestations, using clear, accessible language. The authors explain the underpinnings of CP while sharing that much can be done to promote child and family development, enhance the capabilities of young people with CP, empower their families and chart a course into adulthood.

According to reviewer, Jay P. Goldsmith, MD, Tulane University School of Medicine, “Although one might find many pediatric neurology books that describe CP extensively, none can approach the overall understanding of this disability that this book achieves. He adds, “A Canadian developmental pediatrician [Dr. Rosenbaum] and an English pediatric neurologist [Dr. Rosenbloom] bring two lifetimes of experience to this book, but more importantly, they display their sensitivity and compassion for the people afflicted with cerebral palsy and their families throughout.”

Per CPIRF CEO and President Glenn Tringali, “Dr. Rosenbaum is recognized as among the most experienced developmental pediatric researchers in the world and this book is further evidence of his knowledge and dedication to our field. His tireless support of our Foundation through leadership on the Scientific Advisory Council has been critical to our mission to fund research and educational activities directly relevant to discovering the cause, cure and evidence based care for those with cerebral palsy and related developmental disabilities.”

Professor of Pediatrics at McMaster University in Hamilton, Ontario, Dr. Rosenbaum is also co-founder of CanChild Centre for Childhood Disability Research at McMaster, an award-winning multidisciplinary health system-linked research centre. His dedication to CP research is evident in hundreds of peer-reviewed scientific journal articles and research grants, and several national and international neuropediatric, research and teaching awards.

Cerebral Palsy: From Diagnosis to Adult Life is available at barnesandnoble.com and amazon.com.

Pictured from left to right are: Adrian Konstantinov, Ben Juliano, Theo Juliano and Martin Konstantinov

Never underestimate the power of four single-minded 13-year olds, especially when it involves two sets of brothers. The efforts of four students from Lake Mary Preparatory School in Lake Mary, FL, resulted in a donation of $3,800 each to the Cerebral Palsy International Research Foundation and United Cerebral Palsy of Central Florida.

Theo Juliano and his brother Ben, who has Cerebral Palsy, joined forces with Martin and Adrian Konstantinov in launching the inaugural Lake Scary 5k Run/Walk for Cerebral Palsy. Martin set the wheels in motion after asking Ben’s dad David Juliano what he could do to help kids like his good friend, Ben.

“Through the support of family, friends, Lake Mary Prep staff, local celebrities, and public officials, the event was a major success,” said David Juliano. “The proud teens are already planning for next year,” he added.

We’re delighted to receive this donation, and applaud the hard work and accomplishment of these four devoted young people, their families, school personnel and all who supported them,” said CPIRF CEO and President Glenn Tringali.