December 8, 2006 EXTENSIONS OF REMARKS, Vol. 152, Pt. 18 23803 HONORING CHICAGO vocates public policies which guarantee these field, including literature, technology, and JOAN HIGGINBOTHAM rights and ensure the understanding of the in- music. My hometown of Chicago has more dividual and societal implications of human people of Polish descent than any other city HON. RAHM EMANUEL sexuality. The Planned Parenthood Associa- outside of Poland. I am dedicated to con- OF ILLINOIS tion encourages research and the advance- tinuing the strong record of cultural and eco- ment of technology in reproductive health care IN THE HOUSE OF REPRESENTATIVES nomic ties between our two nations. and the understanding of inherent bioethical, The United States is grateful to Poland for Thursday, December 7, 2006 behavioral, and societal implications. In addi- its friendship and commitment to the demo- Mr. EMANUEL. Mr. Speaker, today I rise to tion, the agency employs trained educators cratic ideals of liberty and human rights. Po- honor Astronaut Joan Higginbotham. who conduct extensive community outreach land has also proven to be a strong ally of the Higginbotham is a member of the crew on the and educational programs, offering com- United States, assisting in global efforts to Discovery that is scheduled to prehensive, age-appropriate sex education combat terrorism, and providing troops and re- launch tonight from NASA’s Kennedy Space and health programs to thousands of New Jer- sources for Operation Iraqi Freedom. Center. Additionally, she is a fellow sey residents every year. Everyone is wel- Mr. Speaker, I am honored to join the citi- Chicagoan, and I wish her the best of luck as come, regardless of race, age, income, sexual zens of my district, as well as those of Polish she prepares for her first mission, STS 116. orientation, or disability. Fees are based on decent around the country in recognizing, re- Higginbotham graduated from Chicago’s the ability to pay and no one is turned away. membering, and celebrating Polish American Whitney Young High School in 1982, and First as board vice president in 1997, then Month. Southern Illinois University at Carbondale in as board chair, Ms. Grounds successfully led 1987. She will be the third African-American the PPAMA through several managerial transi- f woman aboard a NASA mission, and she and tions. She has had leadership roles on Devel- her fellow astronaut Robert Curbeam will opment, Finance, Facilities, Personnel, and REMEMBERING SYDNEY TALLY make history this week on STS 116, the first Public Affairs Committees. She was an incen- Space Shuttle mission with two African-Amer- tive for the board to re-evaluate its own role in HON. TOM DAVIS ican . the organization. A modest, exceptionally or- OF Higginbotham previously worked as a pay- ganized woman, Ms. Grounds excels at ‘‘the load engineer at the John F. Kennedy Space big picture,’’ keeping the board cohesive and IN THE HOUSE OF REPRESENTATIVES Center while also earning two master’s de- efficient, while recruiting extraordinary leaders. Thursday, December 7, 2006 Ms. Grounds is a phenomenal fundraiser. grees from the Florida Institute of Technology. Mr. TOM DAVIS of Virginia. Mr. Speaker, I As a mission specialist on board Discovery, Through both Annual and Capital Campaigns, she has made possible the improvement of rise today in remembrance of Sydney Tally for Higginbotham’s responsibilities will include a her tireless commitment to better the lives of complete rewiring of the International Space services offered to clients, and during her ten- ure the number of patients treated has signifi- active duty servicemembers, retirees, vet- Station’s power supply. She will also have the erans, and above all their families through a responsibility of operating the robotic arm to cantly increased. This is no small task. The annual budget of the PPAMA is about $2.8 distinguished career with the National Military deploy several satellites and to direct payload Family Association. transfers. million, making possible the service of about Widely known and beloved in military cir- Higginbotham will be joined by Mission 15,000 clients per year. cles, this Air Force daughter and Navy spouse Commander Mark Polansky, as well as Robert Ms. Grounds has been an editor, writer, trained as a nurse and pursued her specialty Curbeam , , fundraiser extraordinaire, and tireless worker in public health nursing before becoming a full William Oefelein, and Christer Fuglesang from for the Planned Parenthood Association of the time mother and volunteer after the birth of the European Space Agency, who is the first Mercer Area. She leaves a legacy of fund rais- her first child. Among many service endeav- Swedish astronaut. ing skill, governance expertise, and strong ors, she freely devoted her time serving as Mr. Speaker, I ask my colleagues to join me board leadership that benefits not only the or- teaching assistant, Brownie and Girl Scout in recognizing my fellow Chicagoan as well as ganization, but also the individual, community, leader, Red Cross pediatric nurse, and presi- her fellow astronauts, and to wish them all the and State. dent of four naval officers’ wives clubs. best on their launch tonight and their 12-day Mr. Speaker, on behalf of the entire 12th mission. district of New Jersey, I ask you and my col- In 1983, she joined the NMFA government leagues to join me in thanking Marilyn W. relations staff and served as vice president of f Grounds for her service on the board of the the department from 1987 to 1990 before ris- HONORING MARILYN W. GROUNDS Planned Parenthood Association of the Mercer ing to the position of first paid professional Area. staff member and director. She also sat on the HON. RUSH D. HOLT f NMFA’s board of governors until her recent passing. Mrs. Tally used her leverage through OF NEW JERSEY POLISH AMERICAN MONTH this organization to benefit military families ev- IN THE HOUSE OF REPRESENTATIVES erywhere. Her focus on the military family Thursday, December 7, 2006 HON. RAHM EMANUEL drove her in creating the Military Coalition. Mr. HOLT. Mr. Speaker, I rise today to rec- OF ILLINOIS Women, infants, and children found nourish- ognize Marilyn W. Grounds for over 10 years IN THE HOUSE OF REPRESENTATIVES ment after her advocacy secured legislation of extraordinary service on the board of the Thursday, December 7, 2006 for an overseas nutrition program targeted Planned Parenthood Association of the Mercer Mr. EMANUEL. Mr. Speaker, this month I specifically for military families. Area. proudly join the thousands of Polish-Ameri- Mrs. Tally received numerous awards and Ms. Grounds is best described as a ‘‘profes- cans living in Chicago in a national celebration recognitions for her altruistic work, including sional volunteer.’’ Active in her children’s of Polish history, culture, and pride during Pol- the Military Coalition’s Award of Merit, a Cer- schools and the community, she was at first ish American Heritage Month. tificate of Appreciation from the Defense Com- focused in serving the arts community. It was Celebrated in October, Polish American missary Agency, 1993 Defense Transition the great fortune of the Planned Parenthood Heritage Month includes General Pulaski Me- Services Award from the University of Central Association of the Mercer Area to have her morial Day, which honors the American Revo- Florida, and recognition of her outstanding citi- join their board in 1995. lutionary War patriot Casimir Pulaski. In 1777, zenship by the Military Chaplains Association. The Planned Parenthood Association of the General Pulaski attended his first meeting with Mr. Speaker, in closing, I would like to thank Mercer Area provides comprehensive repro- Benjamin Franklin, to champion the freedom Mrs. Tally for her life’s work and continuing ductive health care which contributes to both of the American people. This early partnership legacy that brought forth significant awareness individual well being and community stability. has been mirrored by the present-day alliance of the needs of military families. I call upon my These services are provided in settings which between Poland and the United States. colleagues to join me in recognizing her ac- preserve and protect the essential privacy and Polish-Americans have made strong con- complishments, and in sharing our condo- rights of each individual. The organization ad- tributions to American culture in virtually every lences with her family and friends.

VerDate Nov 24 2008 09:47 Jan 27, 2010 Jkt 049102 PO 00000 Frm 00047 Fmt 0689 Sfmt 9920 E:\BR06\E08DE6.001 E08DE6 cprice-sewell on DSK2BSOYB1PROD with BOUND RECORD 23804 EXTENSIONS OF REMARKS, Vol. 152, Pt. 18 December 8, 2006 A CALL TO ACTION THE POLITICS the good work of the Melanoma Research tient advocates. Many times, groups end up OF DISEASE ADVOCACY Foundation in bringing greater public aware- ‘‘recreating the wheel’’ in doing very similar ness to this disease, and advocating for more work, she says. Different strategies are being tried in order HON. RUSH D. HOLT public and private sector funding for mela- to organize the patient-advocacy commu- OF NEW JERSEY noma research. nity. Some advocacy groups for major can- IN THE HOUSE OF REPRESENTATIVES [From the Wall Street Journal, Oct. 10, 2006] cers, such as breast cancer and prostate can- ADVOCACY OVERLOAD? Thursday, December 7, 2006 cer, have formed coalitions that have been ACTIVISTS SEEK TO UNIFY EFFORTS OF GROUPS effective in lobbying on common issues. Oth- Mr. HOLT. Mr. Speaker, I want to bring to TARGETING DISEASES; A BRAIN-TUMOR COL- ers end up merging; two separate lymphoma my colleagues’ attention an October 10, 2006 LABORATIVE patient-advocacy groups decided to join article in the Wall Street Journal by Amy (By Amy Dockser Marcus) forces and create one organization instead, the Lymphoma Research Foundation. ‘‘One Dockser Marcus, entitled ‘‘Advocacy Over- At the national Brain Tumor Foundation, Voice Against Cancer’’ is a coalition of many load?’’ The article reviews the current state of executive director Rob Tufel has a standard public health groups that lobbies Congress reply for well-meaning families and patients disease-funding advocacy, and specifically for more federal funding for cancer research. who want to set up a patient-advocacy cites the efforts of the Princeton-based Mela- Eight brain-tumor foundations, including group: ‘‘Please don’t start another organiza- noma Research Foundation to coordinate the Mr. Tufel’s group in San Francisco, formed tion.’’ advocacy activities of a wide variety of mela- There are 141 patient-advocacy groups that the Brain Tumor Funders’ Collaborative to noma organizations. In the past year, MRF cover brain tumors, according to Mr. Tufel, pool money to fund large projects. Earlier has worked to organize a coalition of these while 43,000 people in the U.S. are diagnosed this year, they announced their first joint groups in order to develop a coordinated mes- every year with primary brain tumors, be- funding initiative, giving grants of $2 million sage to Congress and the National Institutes nign or malignant. That’s roughly one group to each of three scientific projects. Not all smaller groups see the proliferation of Health. The goal of this ‘‘One Voice’’ for for every 305 new patients. ‘‘It just doesn’t make sense from the point of view of fund- of foundations as a problem that needs fix- melanoma research is to develop a common ing. Many advocates started their work be- agenda, focused on securing the additional re- ing, or from the point of view of patients and families,’’ who must sort through the numer- cause they lost someone to the disease, and sources to fund the research into better treat- ous organizations and Web sites for informa- want to focus on highly personal goals or ments and cures for melanoma. tion, Mr. Tufel says. ‘‘Competition is good local projects. Small groups also sometimes The Melanoma Research Foundation (MRF) because it keeps us on our toes, but at some worry about having to divert too much of was founded 10 years ago and has become point . . . it becomes ineffective.’’ their meager funds to big projects. ‘‘I don’t the leading research foundation for melanoma. Competition is an issue that many patient- agree with the idea that there are too many melanoma groups,’’ says Colette Coyne, who The Foundation has worked closely with the advocacy groups wrestle with as they strug- gle to raise funds for research, attract great- founded the Colette Coyne Melanoma Aware- research and medical communities encourage ness Campaign in New York with her hus- dialogue and education about melanoma er interest in their diseases, and speed up the search for a cure. Increasingly, advocates are band, Patrick, after their daughter died of through their research congresses; partici- asking: When it comes to a disease like can- melanoma. ‘‘Many work in their community. pated in National Cancer Institute initiatives; cer, is it possible to set a common agenda I think it is a healing thing for people to cre- organized the first steps of a melanoma coali- and speak with a unified voice? ate a foundation when they have lost some- tion for advocacy; and hosts an interactive Now some groups have begun to debate one.’’ website for patients and caregivers. Their whether the large number of organizations The Coynes concentrate their efforts in may be hindering as much as helping in their New York, where they live. They have helped three part mission—supporting basic and promote shade coverings in playgrounds and translational research, education of patients efforts. Many diseases—including AIDS, au- tism and Parkinson’s disease—have more helped push through tough legislation re- and caregivers, and advocating for the mela- than one group that lobbies Congress for garding the use of tanning salons by minors. noma community—is funded primarily through more funding and reaches out to patients But they rely mainly on volunteers and raise community fundraisers across the United and families. With cancer, in particular, around $50,000 through a yearly walk and States organized and managed by MRF volun- there has been an explosion in the number of dinner dance. ‘‘I’d be concerned about being teers. Other primary sources include memorial foundations and advocacy groups in recent committed to large amounts of money for a donations, individual gifts, and unrestricted years, as the Internet allows patients to con- coalition when we’re never very sure what nect with one another more easily. It’s par- our income will be,’’ says Ms. Coyne. None- grants from pharmaceuticals. theless, Ms. Coyne says she believes a coali- The need for a coordinated attack on mela- ticularly true in rarer cancers such as brain tumors or melanoma, where the ratio of the tion is necessary, and she wants to find a noma is more critical now than ever before. number of groups to the number of people way for her group to join. Here are some of the facts about melanoma: who actually get the disease is especially It is within the melanoma community that It’s the fastest growing cancer currently in the high. There are an estimated 40 groups in the one of the most interesting and important U.S.; It’s the most common cancer in young U.S. for melanoma—a disease that will see debates is going on regarding advocacy adults aged 20 to 30; For women, age 25 to about 62,190 new cases and 7,910 deaths in groups, amid growing attention to the dis- 30, melanoma is the primary cause of cancer 2006, according to the American Cancer Soci- ease. Steven A. Rosenberg recently an- death; For women, age 30 to 35, it’s the sec- ety. nounced that he and other National Cancer Institute scientists genetically engineered ond leading cause of cancer death, after Many of these groups wind up competing with each other for the same donors and the advanced melanoma patients’ own white breast cancer. same researchers to sit on their boards. cells to recognize and attack their cancer One of the primary causes of melanoma is There is the chance that groups will dupli- cells. In a report published about 15 of the UV exposure, most of which comes from too cate one another’s efforts, wasting resources patients, two of the patients saw their dis- much time in the sun. Melanoma is survivable, by offering the same programming or serv- ease regress. Translational Genomics Re- if diagnosed early. When a superficial mela- ices. And busy legislators find themselves search Institute in Phoenix and the H. Lee noma is found and diagnosed early, the 5 year uncertain about what the greatest need is for Moffitt Cancer Center and Research Insti- survival rate is 100 percent. But at the oppo- patients because each group emphasizes dif- tute in Tampa, Fla., are working together to create a kind of map of the human mela- site end, when the melanoma advanced to ferent issues or aspects of the disease. There is also recognition that as cancer re- noma genome for researchers. These are the what’s called Stage IV, when it’s disseminated search increasingly focuses on using costly, kinds of projects that a coalition of mela- to major organs, the 5 year survival rate drops cutting-edge technology to identify genes noma advocacy groups could help by lob- as low as 7 percent. Yet, despite these figures and cellular changes as an avenue to new bying for more federal funding and gener- and the growing incidence of melanoma, no treatments, progress is going to take huge ating greater public awareness about the significant advances in medical therapies (or sums of money that small patient-advocacy projects and the need for support. survival) for patients with advanced melanoma groups are unlikely to be able to raise on Nineteen different melanoma groups came has occurred in the past 30 years. their own. together in Bethesda, Md., in late March for Advocacy groups need to ask, ‘‘Couldn’t we a meeting planned by the Melanoma Re- Clearly, there’s a great need for public better leverage some of these resources that search Foundation in order to debate wheth- awareness of the dangers of overexposure to you’re all spending?’’ says Paula Kim, whose er they should form a ‘‘One Voice Mela- the sun. There’s also a need for increased re- Translating Research Across Communities noma’’ coalition to increase the impact of search in identifying the causes and potential consulting group in Green Cove Springs, the community on a federal level. At the cures for melanoma. Once again, I commend Fla., and Fallbrook, Calif., works with pa- melanoma coalition meeting, one of the key

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