Newsletter of the International Association of Sickle Cell Nurses and Physician Assistants

Transcription

1 NEWS Newsletter of the International Association of Sickle Cell Nurses and Physician Assistants Fall 2002 Vol. 9, No. 1 Major Scholarship Fundraiser Planned Participants have chance to win $5000, $3000, or $2000 in IASCNAPA s first worldwide raffle contest Plans have been finalized to begin a year-long campaign to raise money to help endow the IASCNAPA Scholarship Fund. Raffle tickets have been printed and will soon be available for members to sell. 10,000 tickets have been printed and will be sold for $5 each. The goal is to sell all the tickets, raising $50,000. Three prizes will be awarded, totaling $10,000, leaving $40,000 to be added to the Scholarship Fund. All members are expected to sell tickets, demonstrating the Association s commitment to supporting higher education among individuals with sickle cell disease. All members, except Board members and Officers, are eligible to participate and win a cash prize. The official kick-off for the raffle will be at the combined National Sickle Cell Disease Program and Sickle Cell Disease Association of America meeting in Washington, D.C. in September. Ticket sales will continue until the Spring 2003 national sickle cell meeting. Although IASCNAPA is exempt from federal income tax under Section 501(c)(3) of the Internal Revenue Code, the ticket purchase price will not be tax deductible since it buys a chance to win a cash prize. The association has consulted a financial advisor and determined that the fundraiser is permitted since all of the net proceeds from the ticket sales will be deposited in the Scholarship Fund. Suggested Venues for Ticket Sales Hospitals/Clinics Professional meetings Churches Local SCDA chapters Websites Members not attending the September meetings should contact any Board member or Officer for ticket information. [see leadership directory on page 8]

2 News from Some of Our Past Scholarship Winners Hello, my Name is Kellee Hunter First of all I would like to say thank you for the scholarship. There are not that many scholarships out there for people with sickle cell anemia. Now a little bit about me: acting classes when I have the time. I love school and I also love to read. The last book I read was The Coldest Winter Ever and of course Harry Potter. My all time favorite thing to do is going to the movies! I have been told that I should become a critic. I like to hang out with my friends, and shop (you know the normal girl stuff)! I think sickle cell has taught me to live each day to the fullest, and not to let it hold me back from doing the things I like to do. I would like to tell the younger kids to hang in there and don't let anyone tell you there is something that you can't do, because you can do anything you put your mind to. Also, whatever you choose to do, stick with it! Love your family! Any family that you may have. And your friends. Last, but not least, don't forget the nurses and doctors. They are the best and thank them for taking care of you every time you get a chance to. Kellee Hunter Kellee was sponsored by Elva Blatt, IASCNAPA member from The Children s Medical Center, Dayton, Ohio. I am a senior at Wright State University. My major is Communications. I would like to speak at different schools to inform them about sickle cell, because there are so many people that don't know about this disease. I wish I could get like a celebrity walk-a-thon one day. I hope to move to New York City after my graduation. Someday I want to start

3 My Name is Christine Ojong and I have Sickle Cell Anemia I am currently a freshman at Lake Forest College where I plan to major in communications and minor in business. When I graduate from college in the year 2005, I hope to use my degree to get a job in advertising or to work for a major corporation. My dream job would be to work for Oprah as her headadvertizing consultant. I am very grateful to have received this scholarship because it helped to relieve some of the financial stress of college payments off my mother. I am also glad to have gotten this scholarship because it helped me to attend the school I dreamed about during high school. Now that I am finally attending Lake Forest, I find it difficult at times to balance school and my health. All of my classes require everyday attendance for students to fully understand class material and between doctor s appointments and those days when I just don t feel well, I have had to miss some days of class. All of my professors know about my sickle cell anemia, so when I miss class they meet with me to discuss what I missed during lecture. To avoid getting sick I drink lots of water. Most of the time I try to drink at Christine Ojong and roommate at Lake Forrest College least eight glasses a day. I also dress warmly and take my medication regularly. It was hard at first adjusting to not having my mother around to remind me of these things but now that I am on my own I have control over my responsibilities. I am truly enjoying my time at Lake Forest and I am glad I was given the opportunity to attend this school. Thanks to everyone who financially helped make my dream come true. Christine was sponsored by IASCNAPA member Janice Beatty from Chicago Children s Memorial Hospital April Blackwell wants to Thank IASCNAPA April Blackwell wrote her sponsoring IASCNAPA member, Debbie Boger, at Wake Forest University in Winston-Salem, NC, I wanted to thank IASCNAPA for the scholarship that I received in The scholarship that I received helped me a lot. I uses it to pay towards both my tuition and books. It is nice to receive help and support, because that is one less thing to worry about. I am a rising junior at the University of North Carolina at Greensboro, and I am doing continued on page 3

4 April s Thanks continued from Page 2 well. I hope to graduate in May of 2004, and plan to teach at the high school level. Thank you for helping me reach my goals. Debbie adds the following information to help update us about April. She is now 19 years old and is majoring in history with a minor in sociology. She is from Pelham, NC. She has two older siblings, one of whom also has sickle cell disease. She has been active with the Sickle Cell Disease Association of the Piedmont and is a past North Carolina Poster Child. She was nominated and chosen to participate in the National Youth Forum on Medicine. She likes to swim and play softball. April has been a role model for the sickle cell program here, says Debbie. She is a very social, outgoing, pleasant person to be around. She has had significant CNS complications of her illness, and is therefore on a program of chronic blood transfusions and Desferol therapy. Debbie reports that she is extremely compliant with medical management and has been very successful in her school efforts. She is bright, determined, and goal oriented, and will undoubtedly achieve the goals that she has set for herself. Tribute to Levar Hairston We were so saddened to learn from Debbie Boger that Levar Hairston, recipient of one of the first IASCNAPA scholarships, died 3 days before graduation from Wake Forest University this year. He had struggled with his illness for 6 years during college and had earned a degree in political science. Levar s extraordinary accomplishments in his life are a tribute to both he and his family and to all young people with sickle cell disease. Debbie, IASCNAPA Treasurer and Levar s scholarship sponsor said, Levar will not be forgotten. We all admired him so and our thoughts are with his family. Executive Committee Retreat Held in Atlanta Eight members of the IASCNAPA Executive Committee convened for a day-long retreat at the Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital in Atlanta in April. President Renee Cecil chaired the meeting. Others in attendance included Vice President Bill Schultz, Secretary Sara Day, Assistant Secretary Gwen Swinson, and Board members Ann Earles, Charlotte Hoof-Dixon, Diana Gordon, and Louise Dorn. The meeting was necessary since the Association s usual annual spring meeting was delayed to coincide with the combined SCDAA/NIH-NHLBI in September in Washington, D.C. The Atlanta agenda included planning for the September meeting and the major fund raiser for the Scholarship Fund.

5 SCDAA s Kermit B. Nash, Jr. Academic Schorlarship The Sickle Cell Disease Association of America, Inc. awards annually the Kermit B. Nash, Jr. Academic Schorlarship to a graduating high school senior with sickle cell disease. The eligible applicant must have a minimum 3.0 GPA, and must be planning to attend an accredited 4-year college or university in the Fall semester following high school graduation. There is only one award for $5000 per academic year, up to 4-years, for a total of $20,000. The award is disbursed in increments of $2,500 per semester based on academic status. The goal of the scholarship program is to reward academic achievement of individuals with sickle cell disease and to promote their pursuit of educational goals. The award is available only to US citizens and permanent residents. Students winning the scholarship must remain in good standing by the college s definition. Official transcripts are required each semester prior to disbursement of the award. One semester of academic probation forfeits disbursement; two consecutive semesters of academic probation forfeits the scholarship. The scholarship winner will be required to give a short presentation at the SCDAA National Convention. SCDAA will provide the recipient with round-trip airfare and onenight s hotel accommodations. Applications for the scholarship may be obtained from any SCDAA member organization, Comprehensive Sickle Cell Center, or selected Sickle Cell Program. Students in regions not covered by one of these organizations may request, in writing, an application from the SCDAA National Office. All applications must include a physician s certification of the sickle cell disease diagnosis. The usual submission deadline is at the end of May and individuals are encouraged to begin the application process well in advance. Jackie Davis Appointed Membership Chair Jacqueline Jackie Davis, RN, MPH, Nurse Coordinator at the Pediatric Sickle Cell Program at Duke University Medical Center, has been appointed chair of the Membership Committee. Many of you may already know this as she has been in touch with active members to verify contact information, particularly addresses. Jackie is enthusiastic about her appointment and has plans to be visible at the September meeting as she wants everyone on her team in an effort to boost membership. Prior to her position at Duke, Jackie was the Sickle Cell Nurse Coordinator at Yale. She has been an Association member for many years and is a strong advocate for patients with sickle cell disease. continued on Page 5

6 Davis Chairs Membership Committee continued from Page 4 At a recent Baby Hug training session in Baltimore, Jackie seized the opportunity to inform nurses about the organization. From that small effort, several nurses joined the Association. She also has redesigned the Membership Application, which she plans to have at the September meeting. She encourages everyone to let her know about potential new members since she can provide them with printed material about the Association. I believe any sickle cell nurse or PA would conclude that the Association is an important organization, said Davis. People just need to know about its goals and objectives and the effort that is being made toward supporting higher education in individuals with sickle cell disease. From the President Since the last newsletter, the officers have continued to provide monthly communiqués embodied in IASCNAPA Notes. Hopefully you have been receiving them and have been kept informed about our current projects. If not, please let us know so we can fix the situation. Between the monthly Officer Conferences calls and the monthly Board Conference calls, we some how manage to keep focused. It doesn t seem like it was almost a year ago, but the Association by-laws were reviewed and revised in September Basically we rewrote the document to provide a more user friendly language. If you are interested in receiving a copy, please let our Secretary, Sara Day know. We all missed having a Spring meeting, which gave way to the combined National Sickle Cell Disease Program and Sickle Cell Disease Association of America meeting this September. The planning for a Washington, D.C. 30 th Anniversary meeting was reminiscent of the meeting in Whenever the timing for these national meetings is changed, it has an impact on the Association s calendar as well. So it seems that I just took over as President and now our Vice President, Bill Schultz, will be handed the reins again at the September meeting. I think we all know that for an organization to be successful it needs an Renee Y. Cecil, RN, BSN IASCNAPA President active and growing membership. What can we do to increase the membership of our Association? Here s an idea. Each of us works in a city or town where there are probably other nurses and PAs who care for individuals with sickle cell disease. If each of us started to meet on a regular basis with these people and encouraged them to join IASCNAPA, just think of how our organization would grow. We need to let these nurses and PAs know that we are here and what our goals are as an organization. We have appointed Jackie Davis, Sickle Cell Nurse Coordinator from Duke Pediatrics, as Membership Chair. She has already taken several initiatives to boost membership (see related article on Page 2). Please feel free to contact me or any of the leadership with any concerns or ideas you may have. We have to work together to keep us going. It has been a privilege for me to serve as your President.

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9 President Renee Cecil, RN, BSN Children's Hosp of Philadelphia W (215) F (215) cecil@ .chop.edu Vice President William Schultz, MHS, PA-C Duke University Medical Center W (919) F (919) schul001@mc.duke.edu Secretary Sara Day, RN St Jude Children Research Hospital W (901) F (901) sara.day@stjude.org Treasurer Debbie Boger, RN Wake Forest University School of Medicine W (336) F (336) dboger@wfubmc.edu Assistant Secretary Gwen Swinson, RN, BSN Montefiore Medical Center W (718) F (718) gswinson@hotmail,com Assistant Treasurer Diana Gordon, RNC, BSN, CPON East Carolina University School of Medicine W (252) F (252) gordond@mail.ecu.edu, Chairman Ann Earles, RN, PNP Children's Hospital Oakland W (510) F (808) aearles@mail.cho.org Janice Beatty, RN, BSN Children s Memorial Hospital Chicago W (773) F (773) jbeatty@childrensmemorial.org Louise Dorn, RN, MS University of Illinois W (312) F (312) adornconsult@aol.com Charlotte Hoof-Dixon, RN S. California Kaiser Permanente W (323) Charlotte.M.Hoof-Dixon@kp.org Collis Rochester-Peart, RMN, SRN, SCM SE London Sickle Cell and Thalassemia Centre W Collis.peart@chsltr.sthames.nhs.uk Patricia Thomas, RN, MPH Retired H (702) pthomas1952@aol.com Betty Leef, RN, BSN Rhode Island Hospital W (401) betty_leef@hotmail.com Membership Chair Jackie Davis, RN, MPH Duke University Medical Center W (919) F (919) davis177@mc.duke.edu

10 IASCNAPA MEMBERSHIP APPLICATION (please type or print in ink) DATE LAST NAME FIRST NAME MI Professional title, degrees, faculty appointment, etc. PI HOME ADDRESS: Street Apt # Suite Rm # City State Zip Code Country HOME PHONE (Include area code): WORK INFORMATION: Employer, Institutional Affiliation Division/Department Street or PO Box No Rm# Suite # City State Zip Country Work Phone#1 (include area codes) Work Phone#2 FAX# address Preferred Mailing Address: Home Work Membership Category: Full Member: $65 Associate: $25 [RNs & PAs not eligible for Associate Memberships] -Dues Payable Annually on March 1 in US Dollars Only- Mail Application & Dues to: IASCNAPA, c/o Debbie Boger,RN Wake Forest University School of Medicine, Department of Pediatrics, Medical Center Blvd, Winston-Salem, NC

11 CHARTERED 1990 P.O. Box Madison Avenue Memphis, TN Address Correction Requested International Association of Sickle Cell Nurses and Physician Assistants Sara Day & Lynn Wynn from TN