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 2016 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 and adult nephrology symposium KUFA and NephCure Kidney International collaborated as educational partners on the regional leg of the NKI national Nephrotic Syndrome Symposium Series. Dr. Gerald Appel from New York-Presbyterian/Columbia University Medical Center and Dr. Frederick Kaskel from Montefiore Health System Co-Chaired the all-day program on Friday, November 4, 2016 at the New York Academy of Medicine, 1216 Fifth Avenue. Nearly 200 participants attended this accredited educational activity for pediatric and adult nephrologists, nephrology fellows, primary care providers, transplant physicians, nurses, and medical students. Patients and their families joined the medical teams and participated in concurrent meetings. An impressive group of physicians from prestigious institutions in NY, NJ, MA, and MN participated in the extremely well-received symposium.

3 Fall Meeting with Renal Pathology KUFA s Council of Pediatric Nephrology and Urology (CPNU) hosted a Fall meeting with Renal Pathology on Friday, October 14, 2016 at Cornell Weill Medical Center. Surya V. Seshan, MD, Chief of Renal Pathology; Director, Electron Microscopy Laboratory; Professor of Clinical Pathology at the NewYork-Presbyterian Hospital and Weill Cornell Medicine invited guest pathologists from Einstein/Montefiore, NYU-Langone, Mount Sinai, Weill Cornell, and Nephrocor to present to physicians and trainees on interesting and difficult cases. 28 Pediatric nephrologists and nephrology fellows attended. 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. 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. Genzyme/Sanofi employees, once again supported the KUFA Award in memory of Vince Stefano. We received a large number of applicants from across the US for the KUFA Award, the New Day Rehabilitation Award, Bright Star and Covelli Family Achievement Awards. A record number of nurses, social workers, educators and transplant coordinators have reviewed the KUFA and New Day awards and the Stefano family again participated in the final KUFA review. Our awardee is Allison from Altoona, PA, an impressive candidate with ties to the NYC and PA nephrology and urology medical communities.

4 To quote one of Allison s healthcare nominators: I am honored to have the opportunity to write the strongest possible letter of recommendation for Allison, who is applying for the Vincent Stefano Scholarship Award through the Kidney & Urology Foundation of America. She understands the importance of making contributions to our society and humanity in order to help advancement She is worth the investment as the payback to society will be synergistic. And from Allison s nephrologist nominator: her interest in becoming a physician s assistant is sincere, passionate, and well-informed She is well practiced with the medical regimen to which she will adhere in the coming years and can consider that an unavoidable part of her life I am supremely confident that she can do it. Her ability to box that up and move on to something more aspirational and ambitious is why everyone that knows her is impressed by, and in admiration of, her dedication and momentum. She would truly make KUFA proud and be an able ambassador for its missions. Congratulations, Allison, a most deserving KUFA scholarship awardee! 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. 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

5 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 22 nd Annual NYC Walk the Walk in Central Park on October 30. 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, all NJ residents at risk for renal failure and the organ donor community (donors, recipients and those who wait ), hundreds 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 ( There are currently 3,000 members from 10 states across the US and 9 additional countries. 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. 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

6 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.