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Home My WebLink AboutM-01-0364ALS Recovery Foundation 555 NE 34th Street, Suite 1103 Miami, FL 33135 305-573-0936 BeatALS@aol.com February 22, 2001 Mr. Carlos A. Gimenez City Manager City of Miami 444 SW 2nd Avenue, 10th Floor Miami, FL 33131 Dear City Manager: CC' cLv/ 15 My name is Kevin Packman and I am the Executive Director of the ALS Recovery Foundation, a newly created 501(c)(3) organization in South Florida. I serve the Foundation in a purely voluntary capacity as I am an associate with Greenberg Traurig, P.A. I was referred to you by Lina Blanco, Special Events Coordinator with the City. I am writing to request a personal appearance for In -Kind Services and Waiver of Fees from the City of Miami Police Department for which we would list the City as a sponsor of the Lou Gehrig's Disease Run/Walk. The Lou Gehrig's Disease Run / Walk will be held on May 12, 2001, and is the Foundation's first community outreach event, a IOK run, 5K run, and a 5K walk through the streets of Coconut Grove, Florida. The Foundation hopes to educate the public as to the devastating impact ALS has on its sufferers and family members and this event is the first of many that will enable us to further our mission. Our mission statement is: The ALS Recovery Foundation is a non-profit organization that is committed to creating public awareness, promoting research and education and raising funds in order to help provide patient care and find a cure for this life threatening disease. Amyotrophic Lateral Sclerosis, as it is medically known, is a fatal neuromuscular disease. First discovered in 1869, there is still no known cause or cure. Persons with ALS ("PALS") have a life 1: oi- 364 expectancy of 2-5 years. Those that live long enough will eventually become paraplegics, losing the ability to care for themselves including breathing, talking and eating. In addition they become incontinent. Considered a rare disease, 1 in every 300-400 persons alive today will die from ALS. Considered differently, of today's population more than 300,000 persons will die from ALS. ALS is an equal -opportunity killer. It knows no boundaries, striking men and women, young and old, regardless of ethnicity or religion. For those unfortunate to be stricken by ALS, as there is nothing that can be done to inoculate oneself from being diagnosed, it is the equivalent of receiving a death sentence. 90% of persons afflicted have a sporadic form of this disease, with no history of ALS in their families; the remaining 10% of persons afflicted have a hereditary form of ALS. The Foundation's Working Board consists of 22 people, all volunteers. We have no paid staff, with an Advisory Board that consists of Senator Bob Graham (D. FL) and prominent members of the South Florida professional community: including Antonio L. Argiz, (CEO Morrison, Brown, Argiz & Company); Walter G. Bradley DM FRCP (Professor and Chairman Department of Neurology University of Miami School of Medicine and Director, Kessenich Family MDA ALS Center); Romero Britto (Britto Central); Simon Frank, M.D. (South Miami Hospital); Phil Frost, M.D. (CEO IVAX Corporation); Norman Lipoff, Esq. (Shareholder, Greenberg Traurig, P.A. ); Howard Lucas, (Partner, Goldstein Schechter Price Lucas Horwitz & Co. P.A.); Ritchie Lucas (CEO, Creatabilities); Miriam Lopez (President & CEO TransAtlantic Bank and President, Florida Bankers Association); Manuel D. Medina, (Chairman, CEO & President, Terremark Worldwide); Edward Sternlieb (Henry Lee Enterprises); and Brian L. Weiss, M.D. (Weiss Institute). We are proud to announce that, to date, our media sponsors include The Miami Herald, El Nuevo Herald, Radio Disney, Y-100, WPLG Channel 10 and Univision 23. Event sponsors include, among others, Greenberg Traurig, P.A. , Perry Ellis International, LEXIS / NEXIS , Arvida Realty, American Airlines and Norwegian Cruise Lines. Romero Britto designed the event- brochures and t - shirts, and The Miami Runners Club has agreed to assist with operational aspects of the event. Furthermore; the following professional associations have agreed to support the event: attorneys, podiatrists, bankers, dentists and certified public O1_ 364 accountants. As the Foundation's Executive Director, I have maintained an active role in educating the public as to the devastation caused by ALS. I have spent more than a third of my life fighting ALS as my father was diagnosed with this disease in 1988, my senior year of high school. As a college sophomore, I lobbied then Texas Governor Ann Richards, to declare April, 1991 as "Lou Gehrig's Disease Awareness Month." Several projects were orchestrated to occur during this time, including the following: • the University of Texas campus was decorated in navy-blue ribbon in honor of Gehrig (thus becoming the origin of the ALS blue-ribbon campaign); • specially designed tennis ball cans with ALS messages were located throughout Austin Taco Bells and other college stores from which a little under $1000 was raised; • a baseball little league for underprivileged Austin youth's was coached by fraternities was conducted in Gehrig's honor; and • a petition demanding more federal monies be allocated to ALS research was circulated and secured 15,000 Florida signatures and 10,000 Texas signatures. After securing the petition signatures, I brought the petitions with me to Washington, D.C., the summer of 1991, where I was interning for Senator Bob Graham. After lobbying support from the Senator, I then drafted and helped lobby the passage of Senate Joint Resolution 174 and House Joint Resolution 318 declaring May, 1992, as "National ALS Awareness Month." I hope that you will consider joining the Foundation and me in our crusade to fight ALS. If you have any questions regarding ALS, the Foundation or the Event, please feel free to contact me. Sincerely, Kevin . ac an 01- 364 CITY OF MIAMI, FLORIDA INTER -OFFICE MEMORANDUM TO The Honorable Mayor, and Members of the City Commission 0649 FROM : Carlos A. nez City Manager BACKGROUND: DATE : APR 17 2001 SUBJECT : REFERENCES: FILE : Personal Appearance Kevin Packman / ALS April 12, 2001 ENCLOSURES: City Commission Mr. Kevin Packman Executive Director of the ALS Recovery Foundation, Inc. a not for profit organization in the State of Florida has requested a personal appearance before the City Commission on April 12, 2001. The organizers of the event have met with City staff. The organizers will request financial support for City services as it relates to in-kind assistance and fee waivers. RECCOMENDATION: It is recommended that Mr. Packman's request not be approved due to severe fiscal constraints. Additionally, the granting of this request would set a precedent for other�organizations desiring to obtain financial assistance from the City. CAGftkCA/Irb 01- 364 LOU GEHRIG'S DESEASE 10K RUN; 5K RUN/WALK SATURDAY, MAY 12, 2001 ESTIMATED COST OF CITY SERVICES AND FEES CITY WAIVABLE OTHER SERVICES FEES FEES Police Department (Security) $3,054.00 (Permit) $ 100.00 (Admin. Fees) $ 390.00 Fire/Rescue (Insp.-Fire & Rescue) $ 0.00 (Permit) $ 55.00 (Admin. Fees) $ 0.00 Solid Waste (Labor/Clean Up) $ 168.00 (Equipment Rental) $ 100.00 (Disposal Cost) $57.50 Parks & Recreation (Labor) $ 0.00 (Equipment Rental) $ 0.00 (Permit / Fee) $ 0.00 TOTAL $3,222.00 $ 645.00 GRAND TOTAL: 24 TOTAL IN-KIND SERVICE $ 645.00 TOTAL PAID BY PROMOTER $3,279.50 $57.50 SALES TAX IS NOT INCLUDED IN THIS BUDGET. IF THE SPONSOR PUTTING ON THE EVENT IS A "FOR-PROFIT" ORGANIZATION, SALES TAX WILL HAVE TO BE INCLUDED. Submitted into the public cord in cOnnection i -h item 01- 64