Friedreich's Ataxia Parents Group
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The following are sample letters that you may use or adapt to fundraise for FARA - Friedreich's Ataxia Research Alliance: #1 Submitted by Sue Kittel -- This letter was printed on Holiday stationary and included with our Christmas and Year 2000 greetings. Hope for a New Millennium….I have hope. That magic thing that I had lost or misplaced. The future looks dark no more. except when necessary to make plans. I try to let the future take care of itself. The future will be made up of today and todays, stretching out as short as now and as long as eternity. Hope is justified by many right nows, by the rightness of the present.
Wishing you the Brightest Year 2000, that only HOPE can bring. Please join me in my HOPE *FARA * Friedreich’s Ataxia Research AllianceURL: http://www.faresearchalliance.org/ #2 Submitted by Raychel Bartek-- MODEL LETTER 2000 (Each sender will want to personalize and customize this first paragraph, especially the portions in brackets, but here is our draft): Dear , As you know, [our 14 year-old son, Keith], was diagnosed with a rare neurodegenerative disorder named Friedreich's Ataxia (FRDA). FRDA is a life-shortening genetic disorder which afflicts about one in 50,000 people. Symptoms include impairment of vision, hearing and speech; scoliosis (curvature of the spine); diabetes; a serious heart condition; and loss of strength and coordination in the legs and arms. The onset of symptoms is usually in childhood. Most patients need a wheelchair full-time by their 20s. This relentless disorder has already robbed [Keith] of his ability to [ride a bike, rollerblade and write legibly]. Walking is becoming more and more difficult. Sadly, there are NO treatments or cures and average age at death is in early adulthood. Words cannot describe the devastation we feel, but we are working hard to find solutions. The FRDA gene was found in 1996 by a team led by Dr. Massimo Pandolfo. That discovery has revolutionized the study of FRDA, leading to an extraordinarily rapid explosion of findings relevant to the disorder. There is real HOPE AND EXCITEMENT in the FRDA SCIENTIFIC COMMUNITY. Due to the relatively small population affected by this disease, however, funding through traditional sources has been limited. Redirecting our anguish towards efforts to accelerate research, we are raising funds for the Friedreich's Ataxia Research Alliance (FARA). FARA has hosted an international scientific conference at the National Institutes of Health, assembling the world's most prominent and promising researchers. The workshop fostered collaboration among the researchers in the field, integrated the most up-to-date findings from the various research disciplines relevant to FRDA, and identified promising new avenues for research. In the year 2000, FARA will award research grants to scientists studying FRDA and establish a patient database for promising clinical trials. Because FARA is a 501(c)(3), tax-exempt organization, your contribution is fully tax deductible. 100% of your contribution is dedicated to research efforts to find a treatment or cure for Friedreich's Ataxia-- no donation will be used for overhead or administrative expenses. We hope you will share our concern and will want to help. If you already support various charities, we ask that you consider adding one more to your list: Friedreich's Ataxia Research Alliance (FARA) Part of our mission is to raise the level of awareness of Friedreich's Ataxia, so please share this letter with those who might be sensitive to our plight. Although heartbroken by this disease, we are cautiously optimistic about the direction of research. With your help, we hope and pray that the research you support will hasten a breakthrough that will help [Keith] and all patients and their families coping with this extremely rare, relentless disease. Thank you for caring, FARA is a 501(c)(3), tax-exempt organization and all contributions are fully tax-deductible. For further information about FARA, go to http://www.faresearchalliance.org/ |
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