Research and Programs that Touch People

Transcription

1 Research and Programs that Touch People 104 West 40 th Street, Suite500, New York, NY Phone: Fax: Toll-free: West Main Street, Suite G, Freehold, New Jersey Phone: Fax:

2 PROGRAM SUMMARY The Kidney & Urology Foundation of America (KUFA) is a major voluntary 501c3 nonprofit health organization (tax ID # ) which, for six decades has developed and supported programs that improve the lives of those suffering from kidney and urologic diseases and those who wait for organ or tissue transplants. The Foundation brings together the finest physicians, scientists, medical professionals, caregivers and corporate strategists in our mission to help the kidney, urology and transplant patient. A Board of Directors governs KUFA and is comprised of leaders in their respective fields, all of whom serve as volunteers, dedicating their time and expertise to our mission. The Board of Directors consists of The Executive Board and Board of Trustees, presided over by Mr. Sam Giarrusso; the Scientific Advisory Council; the Urology Board; and Council on Pediatric Nephrology & Urology. We maintain a small but dedicated staff of professionals committed to fulfilling the mission of the organization, and meeting the needs of the patient, renal professionals, and the public. We recognize the importance of helping families navigate the medical landscape and, when circumstances dictate, we provide resources connecting patients and their families to medical providers in nephrology, urology, and transplantation. We continue to field numerous health - related inquires serving as a resource for patients, families, and at risk populations, providing up to date medical information. We continue to guide patients through the transplant process and always go the distance for patients and family members who have concerns about their kidney and urologic health. KUFA responds to thousands of patient and family health-related inquiries each year through our toll-free 800 number, info@kidneyurology.org and via our web site: pediatric symposium. Kidney & Urology Foundation was approached by the American Society of Pediatric Nephrology (ASPN), the pre-eminent pediatric nephrology membership organization in the US, to host and serve as educational partner for their 3 rd Annual Multidisciplinary Symposium for the pediatric nephrology and transplant healthcare teams. The program was held on October 1 & 2 at the New York LaGuardia Airport Marriott. KUFA collaborated with planners from throughout the country to make this a most impressive 2 days of learning and networking for nurses, advance practice nurses, social workers, renal dietitians, physicians, and child life specialists. Attendees traveled from 20 states and Vancouver, BC to attend this extremely well-received program. KUFA Patient Scholarship and Awards The Kidney & Urology Foundation of America sponsors an awards program intended to stimulate rehabilitation and adjustment to living productively with renal and urologic disease. It includes scholarships, achievement awards and individual recognition awards.

3 The spectrum of awards provides opportunities to patients of different ages, backgrounds, interests and strengths. The awards offered are as follows: Kidney & Urology Foundation of America Scholarship Award enables college age youth with financial need to pursue their dream of a college education. Financial support of up to $2,000 per year is provided to a college bound young adult (ages 17 25) who has been diagnosed with kidney disease and who demonstrate financial need. This award is renewable for a maximum of 4 years. Bright Star Recognition Award recognizes patients and family members for their courage, strength, determination, generosity, and kindness. New Day Education and Rehabilitation Award provides support to adult patients seeking to improve their education, productivity and quality of life. Covelli Family Achievement Award recognizes youth for their educational and personal growth. The KUFA Vincent Stefano Scholarship Award was created to honor Vincent Stefano who was dedicated to improving the quality of life for patients suffering with chronic kidney disease and a strong organ donor advocate. Vince passed away in This award helps a kidney patient who embodies the values, ethics, and commitment idealized by Mr. Stefano. The 2012 recipient was a young man with FSGS. Chris, a transplant recipient hopes to foster better methods of transplantation by training to become a chemical engineer and specialist in nanotechnology. He completed his final year of college, was a straight A student and is well on his way to reaching his goals. The 2013 recipient, Alexandra, was diagnosed with a rare kidney condition just prior to entering high school. Also with a 4.0 GPA, Alex s mission is to become a Pediatric Nurse Practitioner. The review committee, comprised of a dozen renal professionals (nurses, social workers, educators) and the family of Vince Stefano, selected the scholarship awardee, Christine, a Rochester NY resident. Christine is a bright and resilient young lady with a history of severe kidney disease since 8 th grade. She is attending St. John Fisher College with a double major in inclusive Childhood Education and English. Christine earned a GPA of 3.8, making the Dean s List! We are proud to announce that Andrew P. has been selected to receive the KUFA award! Andrew hails from Baltimore, MD and attends Towson University. He is a 2 time kidney transplant recipient and the first member of his family to attend university. Patient Emergency Grants The Kidney & Urology Foundation s Patient Emergency Grants Program provides financial assistance to patients to help them through unforeseen emergencies. Grants are provided to patients in need for acute emergency situations. Grant requests are submitted by social workers on behalf of the patients and are limited to $100 per patient, per year. Some examples of funded requests include: medical supplies not covered by Medicare or Medicaid, home glucose blood monitors, car repairs (replacement tires for travel to dialysis center), eyeglass replacements for broken or lost glasses, help with a utility bill or plumbing, emergency travel expenses (e.g. funeral for a loved one, family reunion), and clothing expenses for adults or children (house fire, flooding). Requests for specific and temporary situations are given highest priority.

4 Kidney Camp support Kidney & Urology Foundation of America proudly supports The Ruth Gottscho Kidney Camp program at Frost Valley YMCA. Research To help sustain ongoing research sponsored by prominent medical institutions, KUFA submitted letters of support for two grant requests by Columbia University s Center on Glomerular Diseases. The first, a glomerular disease study, was NIH approved and KUFA will assist Columbia with the study protocol. The second application was submitted to the George M. O Brien Urology Cooperative Research Centers program on the causes and development of benign urology disorders. This application has been submitted and results are pending. Walk the Walk for Kidney Disease and Organ Donor Awareness KUFA proudly hosted the 21 st Annual NYC Walk the Walk in Central Park on October 25. Hundreds of kidney patients, organ donors and recipients, their families, the at-risk community, medical professionals and business leaders came out in force to celebrate with us. More than 10,000 kidney patients await a kidney or kidney /pancreas transplant in New York and tens of thousands of end-stage kidney patients are on dialysis at 262 dialysis facilities in New York State. Tens of thousands of individuals more are at risk for renal failure in New York. Walk the Walk NJ took place on Sunday, May 3, Again, serving as a platform for kidney patients, the thousands of NJ residents at risk for renal failure and the organ donor community (donors, recipients and those who wait ) walked in unison at the Jersey Shore. There are more than 12,000 patients on dialysis in NJ as a result of kidney failure (source: Quality Insights Renal Network 3, Annual Report), many of whom, about 3,000 (source: UNOS/US Dept. of Health and Human Services), await a kidney transplant. Inspire.com KUFA hosts an interactive online patient/community support initiative supported by Inspire.com ( This health-focused social networking group serves as an online support cooperative for patients, their caregivers, and loved ones - providing a safe and secure space for members of the kidney, urology, and transplant communities to discuss the topics that are of utmost importance to them. Members contact others who share their particular health concerns, connect with one another for support and information, and receive personalized updates on pertinent clinical trials. There is no fee for KUFA or participating members. There are currently over 2,000 members from 10 states across the US and 9 additional countries.

5 Continuing Medical Education Council of Pediatric Nephrology and Urology (CPNU) The pediatric council of KUFA hosted a full day educational program at the NY Academy of Medicine, Kidney in Crisis: Acute Care Pediatric Nephrology. The conference was CME accredited and was attended by 75 Pediatric Nephrologists, Pediatric Acute Care Specialists, Residents, Students, Fellows in Training and advance practice nurses in pediatrics and critical care medicine. The post activity evaluations overwhelmingly positive and the program clearly provided new information pertinent to practice and patient care. Neonatal Nephrology Nephrologists and neonatologists from New York and New Jersey collaborated on a KUFA conference on neonatal nephrology Update in Neonatal Nephrology was held a NewYork Presbyterian s Heart Conference Center on March 28, The planning committee includes conference Co-Chairs, Manju Chandra, MD, Professor of Clinical Pediatrics, Stony Brook University School of Medicine and Director, Division of Pediatric Nephrology, Winthrop University Hospital and Fangming Lin, MD, PhD, Associate Professor of Pediatrics and Director, Division of Pediatric Nephrology, Columbia University College of Physicians & Surgeons. Drs. Chandra and Lin were joined by Frederick Kaskel, MD, PhD, Professor & Vice Chair of Pediatrics, Director, Division & Training Program in Pediatric Nephrology, Children's Hospital at Montefiore; Kenneth Lieberman, MD, Chief, Pediatric Nephrology, The Joseph M. Sanzari Children s Hospital, Hackensack University Medical Center; and Shefali Vyas, MD, Associate Director, Barnabas Health, Children's Kidney Center. Like our other scientific programs, this symposium engaged disciplines outside of nephrology, with 107 MDs and Nurses from nephrology, neonatology, urology and genetics attending this extremely well received program. This conference provided a forum for specialists in the field to interact and discuss new developments in our understanding and management of congenital anomalies of the kidney and urinary tract (CAKUT), comprehensive treatment of neonatal acute kidney injury (AKI) and longterm effects of low nephron number from prematurity. The Resource Center for kidney, urology & transplant patients and families KUFA continues to receive hundreds of calls from patients and concerned family members for general information and referrals. The Foundation Library offers literature, brochures, and co branded government fact sheets and publications on issues of special concern to those with kidney or urologic disease or those who may be at risk. We include information in English and in Spanish. Our web site hosts invaluable information for the renal, transplant and urology communities. We continue to offer a listening ear to any and all individuals in the at-risk communities, or those with concerns or questions about kidney and urologic diseases or transplantation.