FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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Recurring Clonal ChromosomalAbnormalitiescontinued from 3Kevin McQueen, team leader, and other FA families plan fundraising efforts at Camp Sunshine.Fundraising for FA Research:Join the Winning Team!!In an effort to increase fundraising by FA families, the FA Research Fundhas developed regional fundraising teams. Kevin McQueen, Mark Pearl, andMike Vangel, who are all FA parents and members of the Fund’s Board ofDirectors, have volunteered to develop these teams to provide support tofamilies in their fundraising efforts. Kevin, Mark, and Mike are aided byfundraising team leaders Peg Padden, Lisa and Jack Nash, Kim and JohnConnelly, Rachel Grossman, Brian Horrigan, Donny Burkin, PatrickGleason, and Randy Bloxom. The team leaders will be contacting FAparents in their respective geographical areas to assist them with their fundraisingplans. ◆Our Experience with PGDcontinued from 9truly feel their support and knowthey’re rooting for us as much as ourfamily and friends. For half of ourattempts, we haven’t had a healthy,matched embryo to transfer, and weknow they share our frustration.Statistically, 3 out of every 4 embryos(75%) will not be affected with FA,and 1 out of every 4 embryos (25%)will be an HLA match. Therefore,25% of the 75% (which equals 19%)will achieve both and be an unaffectedmatch. Since not all of the eggsretrieved will be mature and willfertilize into embryos, these aretough hurdles. But we truly believe itHAS to work eventually, and weknow we’ll be successful if we’re giventhe time to try. When the three of ushold that baby in our arms, all of theeffort and disappointments will beforgotten and replaced with purejoy. ◆studies will be important to determinethe time frame between theoccurrence of a chromosome abnormalityand the development ofabnormal morphology. Only 6% ofpatients with normal cytogeneticshad MDS or AML.G-banded chromosome analysiscurrently represents the best methodfor identifying all types of chromosomeabnormalities. However, thefinding that abnormalities of chromosomes1, 3, and 7 comprise thebulk of abnormalities seen in thebone marrow of FA patients presentspossibilities for supplementing andincreasing the sensitivity of screeningstrategies. For example, if G-bandedstudies are normal, FISH can be usedto rapidly screen additional cells forthe presence of 1, 3, and 7 abnormalities.Further, peripheral blood FISHstudies might provide a means ofscreening in between annual bonemarrow examinations.At the University of Minnesota,the following clinical strategy is followed:bone marrow chromosomesare analyzed once per year by G-banding. If an abnormal clone isdetected, the finding is discussedwith the hematopathologist andtreating physician. If there is noMDS or AML present, the bonemarrow is then monitored every fourmonths. If there is evidence of MDSor AML, treatment options are discussed.In general, the treating physicianconsiders the presence orabsence of abnormal clones, theappearance of the cells of the bonemarrow, the availability of a matchedbone marrow donor, and the clinicalcondition of the patient in makingtreatment decisions. ◆18 FA Family Newsletter
Honoring the Beloved Memory ofOur Fallen Diamondcontinued from 14We decided to attempt to reconnectDiamond’s esophagus, one ofher birth defects associated with FA.We thought that we had done all theresearch and had complete confidencein Diamond’s medical team.They advised us that this was a trickyprocedure, but was not life-threatening.Unfortunately for my littleDiamond, she did not do well postsurgeryand passed away on March29, 2003, before my very eyes.At this point I thought my lifehad ended. I believed that I nolonger wanted to be a part of the FAfamily. I wanted to get as far awayfrom Fanconi anemia as I could.But as time went by and we gotcloser to the one-year anniversary ofDiamond’s passing, we started tothink how we could use Diamond’slife story to help others who are facingthe same battles. We realized wemissed our FA family and wonderedhow the families that we had met atthe regional meetings and the FAFamily meeting in Maine were doing.I began again to follow the e-mailgroup and the newsletters. I realizedthat, even though my daughter’s fightwith this horrible disease had ended,we could honor Diamond’s memoryby raising funds for the FA ResearchFund.So we planned a dinner/dancefundraiser. Our goals were verysmall, because we knew this fundraiserwould be very tough on usfollowing the one-year anniversary ofDiamond’s passing. A small group offamily and friends helped greatly. Webrought in a local band and receiveddonations from local businesses.Even with some costs we can reducenext year, we exceeded our goals andwere able to donate $1,500 to theFund. We developed a scholarshipin Diamond’s memory that wasHow You Can HelpYour donations have helped move this fatal disease from anorphaned status in 1989 to a disease with treatments that now buyprecious time for FA patients. As the genetic basis of Fanconi anemiacontinues to be deciphered, your donations are also having an impacton the lives of millions in the general population. To help us continuethe fight, consider these ways to donate:Gifts to celebrate an occasion: If you are celebrating a birth, a birthday,an anniversary, a graduation, a marriage or other gift-worthyevent, consider asking that donations be made to the Fund in honorof the reason for the event.Gifts to commemorate a loved one: Families who have lost a lovedone may ask that a donation to the FA Research Fund be made inmemory of the deceased individual.Bequests: If you are preparing or reviewing your Last Will and Testament,consider making a bequest to the Fund.Matching Gifts: Many employers will match the charitable gift of anemployee. This is an excellent way to double your donation.United Way or Combined Federal Campaign: If you work foran organization covered by either of these organizations, considermaking a donation via your workplace and asking your colleagues todo the same.Donations Online: Look for the PayPal button in the Donationssection of our web page (w)Donations by Telephone: Call us at (541) 687-4658 or toll free at(800) 828-4891.Donations by Mail: 1801 Willamette Street, Suite 200, Eugene, OR97401.The FA Research Fund has an outstanding record of fiscal responsibility.Administrative costs of the Fund have consistently been far belowaverage for similar organizations. Our recent annual audit, completed bythe accounting firm of Moss Adams, documented that the Fund’s 2003administrative costs were 3.80% and the fundraising costs were 2.10%,for a combined total of 5.90%, exemplary by any standard.presented to a graduating seniorfrom the local high school whointends to pursue a degree in themedical field.The fundraiser was a big step forus in the healing process. We usedDiamond’s life story to help educateothers on the needs for organ andbone marrow donors. It also helpedus to stay connected to anotherfamily that was very important to usduring Diamond’s life, and that wasthe FA family. We know our donationwas small, but we hope that wecan build on this year’s success. Everylittle bit helps and, if each family canjust do a little, maybe someday wewill find that cure that will save thelives of all of our wonderful children.My heart, thoughts, and prayerscontinue to be with all of you as youfight this battle. ◆Fall 2004 19
Page 1 and 2: FA FAMILYNEWSLETTER#36 A Semi-annua
Page 3 and 4: Recurring Clonal Chromosomal Abnorm
Page 5 and 6: Ear and Hearing Problems in Fanconi
Page 7 and 8: Karly’s Storyby Nancy RossOur dau
Page 9 and 10: Our Experience with PGDby KatieWe
Page 11 and 12: The Long Journeyby Esmat and Rehman
Page 13 and 14: The Frock kids dressed for the Masq
Page 15 and 16: Why Our Family Decided To Raise Fun
Page 17: Family Fundraising EffortsFrom Janu

FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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