THE PRF TEAM

MESSAGE FROMTHE PRESIDENT

2PRF ON THE MOVE

3CLINICAL TRIAL UPDATES

4TIME FOR ONEPOSSIBLE

CAMPAIGN 2010!

5WORKSHOP 2010

6-7WHAT’S NEWS IN

PROGERIA RESEARCH

8-9PRF QUICK FACTS

10-11NIGHT OF WONDER 2009!

12ANNUAL &CHAPTER EVENTS

13-14OUR LATEST

MIRACLE MAKERS

14-15PROGERIA HANDBOOK

IS HERE!

BACK COVER

newsInApril 2010,The Progeria Research Foundation held its tenth anniversary scientific workshop,“From Bench to Bedside in a Decade.” A record 140 participants from ten countries gatheredin Boston to share their progress in Progeria research,making this our largest and most diverseworkshop yet. Highlights included a Progeria family panel led by Pulitzer Prize-winning journalistAmy Dockser Marcus, an inspiring plenary address from PRF Medical Director Dr.Leslie Gordon,and tremendous excitement about the breadth and depth of knowledge we now have for Progeriaand its window into aging. Read more on pages 6-7.

WWW.PROGERIARESEARCH.ORG • MAY, 2010

Workshop Success!Ten Years and Going Strong

Hayley Okines answers a question about school during the familypanel presentation, as mom Kerry looks on.

Message from the President& Executive Director

Hello everyone,

I wish each of you could have been there to experience

the 2010 workshop. From the first night’s family panel to

the last day’s wrap-up, the excitement was palpable.

I found myself reflecting on past workshops, excited about

the progress we’ve made. I have no doubt that this latest

conference will help push Progeria research as far and as

fast as we had imagined - but hardly dared to hope for —

11 short years ago.

So much news to share with you!

• Thanks to our increased global awareness efforts,we’re finding more children.

• Progeria is getting lots of exposure through televisionand other media.

• PRF spokespeople are sought after to speak atconferences around the U.S.

• Fundraisers abound.

• We are now reporting on multiple Progeriaclinical drug trials

Lots of new people have joined in our efforts, too:

Staff member Donna Bertko has taken the place of Kyra

Johnson, who is pursuing her masters in teaching but

vowed to stay involved; Stephanie Dutchen is our new

newsletter editor and doing a terrific job; little Zach, sister

Brittany, momTina, and dad Brandon are working diligently

as our newAmbassador Family; Dozens of others —

Miracle Makers, families of newly diagnosed children,

researchers, donors,Twitterers, Facebook fans — are

becoming part of the PRF team each year, doing their part

to advance our mission. WELCOME!

With spring comes warm weather, warm greetings and

heartfelt appreciation for your unwavering support from all

of us atThe Progeria Research Foundation.

Audrey Gordon

President & Executive Director

PRF’s Mission:

To discover the cureand effective treatmentsfor Progeria and itsaging-related disorders.

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PRF Staff:Audrey Gordon, Esq.,Executive DirectorSusan Rosenblatt, Executive AssistantDonna Bertko, Clinical Trial Coordinator/

Administrative AssistantLynne MacKenzie, Administrative

Assistant

PRFVolunteers:Corporate Officers:Audrey Gordon, Esq., PresidentCarl Alviti, CPA, TreasurerBarbara F. Gordon, Esq., Clerk

Board of Directors:Scott D. Berns, MD,MPH, FAAP, ChairCarl Alviti, CPAKaren N. Ballack, Esq.Sandra Bresnick, Esq.Rabbi Harold KushnerSuzette Kushner, MSKim ParatoreJohn SengSkipWohlner, MD

Board of Advisors:W. Ted Brown,MD, PhDRobert N. Butler, MDMonica Kleinman,MDGeorge M.Martin, MDRobert K. MorrisonMary Oh,MDWilliam Oh,MDDr.William F. SchulzMel Zuckerman

Medical Director:Leslie B. Gordon,MD, PhD

Ambassador Family:Brandon,Tina, Brittanyand Zach Pickard

Development Committee:Kim ParatoreJohn Seng

Medical Research Committee:Bryan P. Toole, PhD, ChairChristine Harling-Berg, PhDW. Ted Brown,MD, PhDJudith Campisi, PhDThomasW.Glover, PhDLeslie B. Gordon,MD, PhDMonica Kleinman,MDFrank Rothman, PhD

Public Awareness Committee:Liza Morris, ChairScott D. Berns, MD,MPH, FAAPLeslie B. Gordon,MD, PhDRabbi Harold KushnerSuzette Kushner, MSJohn Seng

Publicist:SpectrumWashington, DC

Legal:Sandra Bresnick, Esq.Quinn Emanuel Urquhardt& Sullivan LLP, NY,NY

Alan Jakimo, Esq.Sidley Austin LLP, NY,NY

Karen N. Ballack, Esq.and Jeffrey D.Osterman, Esq.,Weil, Gotshal & Manges, LLP,SiliconValley, CA and NY,NY

Web Site:Karen Gordon BetournayCoordinator

Useful StudiosTechnical/Design

Graphic Designers:Julie PritchardJCR Design, Foxboro, MA

Marie Migliaccio,Topsfield, MARegina Printing, Belleville, NJ

Newsletter Editor:Stephanie Dutchen

Progeria is a fatal,“prematureaging” disease that afflictschildren, who die of heartdisease at an average age of13 years - the same heartdisease that affects millionsof normal aging adults.

Because of Progeria’sconnection to general heartdisease and aging, what we learnfrom Progeria research has thepotential to benefit all of us.

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Introducing PRF’sNewAmbassadorFamilyTina, Brandon, Brittany and 3-year-old Zach Pickard werenamed PRF’s Ambassador Familyin January 2010. The Pickards livein Lexington, Kentucky, and are anintegral part of PRF’s efforts toraise public awareness, involveother families in our programs,and raise funds for research.We appreciate the time andeffort they put into theseimportant activities, along withall the other families that help inthese vital ways.

Go to www.progeriaresearch.org/spokespeople to learn all aboutthe Pickards!

And a hugeTHANKYOU to theNighbors – Steve, Sandy, Josh,Michaela and Megan – for servingas our Ambassador family from2005 through 2009.

Kaylee Halko Shineson The Dr. Oz ShowIn March, The Dr. Oz Show aired a very special segment onProgeria with PRF’s Medical Director Dr. Leslie Gordon, Kayleeand her parents, and geneticist Dr. Jeffrey Innis. Six-year-old Kayleecharmed the audience, and Dr. Gordon spoke to 3.5 millionviewers as the expert on Progeria and itsfascinating relation to aging.The popular andwell-respected medical showhost joins the ever-growingnumber of people whorecognize the value ofProgeria research, not onlyfor children like Kayleebut for the entire agingpopulation.

Read more aboutKaylee’s appearanceat www.doctoroz.com/videos/progeria-and-mysteries-aging

Full SteamAhead to“Find the Other 150”!With a frequency of 1 in 4-8 million, there are an estimated 200 childrenaround the world who have Progeria. When our new “Find the Other150” campaign began in October 2009,we only knew of 54 children. Sincethen,we’ve added an astonishing 9 more to thattotal, largely due to our global awareness cam-paign efforts.

This global campaign seeks to find everychild with Progeria worldwide, and help en-sure they get the care and support theyneed. PRF has set up a special web sitewith Progeria fact sheets, photo galleries anda collection of podcasts in six languages to helpput a face on Progeria.

We are thrilled that in just six months, we’ve seen an unprecedentedjump from 54 to 63 children. The most recent nine live in Brazil, India,Turkey, Pakistan, the Philippines, South Africa and the United States.

Working diligently with our friends at Spectrum and GlobalHealthPR toget the word out, we will find the other 150! Learn more about thecampaign and how you can help at www.findtheother150.org

Over 2,800 Join the Cause on FacebookPRF’s official Facebook page surpassed 2,800 members in April!Thanks to all of our followers for spreading the word andencouraging others to join.

Check us out at: apps.facebook.com/causes/183613?m=92eea645&recruiter_id=39018947

PRF Logo &Web Site Get a FaceliftApril showers brought May flowers—and a new look for the PRFweb site. Visit www.progeriaresearch.org to see the sleek redesign andexplore new features, including a rotating photo spotlight, video pageand drop down menus sovisitors can easily findeverything they want toknow about Progeriaand PRF.

Our logo enjoyed atouch-up, too, with a newlayout and updated birdand hand of Sam Berns,a child with Progeria.

PRF ONTHEMOVE!

The Pickards participated in the2010 workshop as one of their1st Ambassador activities.

The Nighbors, with Dr. LeslieGordon (bottom center), atNIH in 2006.

ProgeriaTriple DrugTrial:Fully enrolled and well underway!While the first Progeria clinical trial was wrapping up, the team transitioned intoan even bigger trial without missing a beat. The new trial began in August 2009and is now fully enrolled. With a grand total of 45 children from 24 countriesspeaking 17 languages, this is our largest and most diverse group yet!

ForTripleTrial details, go to www.progeriaresearch.org/tripledrugtrial. The newtrial is testing a combination of three drugs: the FTIs studied in the first trial,pravastatin, and zoledronate. All three drugs act in different ways to affectprogerin, the protein that causes Progeria.

Of course, a clinical trial of this magnitude is expensive to manage, and thereare precious few sources of support for rare disease research.

But in October 2009, the NIH’s National Heart, Lung, and BloodInstitute awarded the triple trial team a prestigious “GrandOpportunities” grant that will cover many of the costs. Weare thrilled to have earned this extraordinary support from NIH.

However, the grant doesn’t cover all of the tripletrial expenses. PRF will raise about $200,000 forsome costs not covered by the NIH grant.

Visit www.progeriaresearch.org/ways_to_donate.htmlto find out how you can help.

In March,Adalia, Nicholas and Julia were together in Boston for their triple trialvisits.With 2-3 families coming in weekly, children with Progeria and their par-ents have a unique opportunity to meet in person.

First-Ever ProgeriaClinical DrugTrial:All patient visits completed!Three years ago this month, PRF andChildren’s Hospital Boston began the firstclinical trial for Progeria in history. We arethrilled to report that as of December2009, all patients have completed theirBoston visits! Stay tuned for details, as thetrial team analyzes the data and preparesto announce the results.

Thanks to the support of thousands, wewere able to raise all the funds necessaryto cover the trial costs, including testing,staff, travel, food and lodging expenses forthe 28 families from 16 countries whocame to Boston every four months fortwo years. Our heartfelt gratitude goesout to everyone who contributed their“time, talents and treasure” to make thisincredible achievement possible, and ofcourse to all the courageous families whoparticipated.

Imagine: In a single decade, we have gonefrom founding PRF to coordinating the firstclinical trials for Progeria. Most satisfying ofall is the knowledge that this trial maymake a difference in the lives of childrenaround the world. And not only that, butbecause of Progeria’s connection togeneral heart disease and aging, what welearn from this and other trials has thepotential to benefit all of us.

All of the children received trophies at their final, 2-year visitfor the first-ever Progeria clinical drug trial. Here, Mateo,Milagros and Jesper are thrilled to get their awards.

It’s time for PRF’sAnnual Campaign 2010:May 1st to June 15th.The cure starts with one -YOU.

To donate, go to www.onepossible.org.Choose a team, write a note, and enjoy teamleaders’ photos and stories of why they areinvolved in PRF’s work:

TEAM AARON’S PRIDE, led by Ariel KushnerHaber, in loving memory of her brother Aaron

TEAM BALLACK, led by PRF Board memberKaren Ballack from California

TEAM FACEBOOK, for all those who haveFacebook pages and want to show how powerfulthe social media world can be in making thedream of a cure POSSIBLE, ONE by ONE

TEAM FOOSE, led byTerry Foose fromCalifornia, in loving memory of herdaughter Amy

TEAM PARATORE, led by PRF Board memberand campaign chair Kim Paratore fromMassachusetts

TEAM PRF, led by PRF Chairman of the Board Scott Berns, for those who are notaffiliated with any of the other teams but who want to contribute

TEAM SCHOONOVER, led by Cam’s grandparents fromPennsylvania

TEAM ZACH ATTACK, led by Zach's parents from Kentucky

TEAM ZOEY, led by John Marozzi of New Jersey, the grandfather of6-month-old Zoey who was recently diagnosed with Progeria

You can also send a check in the enclosedenvelope and note “ONEpossible.”

PRF is now embarking on historicclinical trials with drugs that showgreat promise to effectively treatthe children. For the first time,there are possible treatments –and just ten years ago there wasnothing being done! Please helpus keep this extraordinarymomentum going.

Last year over 800 peopleparticipated in the ONEpossiblecampaign, raising $100,000 ofmuch-needed funds. Please help usreach this year’s goal of $150,000and give children with Progeria achance at the long and healthy livesthey deserve.

Whatever you can give will makea difference - $25, $50 or more –every ONE of you and yourdonations counts.

Zoey’s smile lights up the room...

Progeria Clinical DrugTrials UpdatePressing Forward in the Search forTreatments

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WhatYourMoney GoesTo

• Drug trials

• PRF’s 6th scientific conference

• Testing undiagnosed children

• Creating standards of care forfamilies and their doctors

• Family-to-family communication

• Funding at least 6research projects

• Collecting cells and sendingthem to researchers aroundthe world

• Spreading the word aboutProgeria and PRF’s work

• Advancing the quest for a cure

5THANKYOU for being ONE who makes a cure POSSIBLE!

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2010 Progeria Research FoundationWorkshop:From Bench to Bedside In a Decade

answered questions from the attendees who wanted tobetter understand how they can continue to help the children.

The family panel was followed by aplenary talk with Leslie Gordon, whobrought us through a journey fromobscurity, through gene discovery, on totreatment trials, and presented a visionof where the field is headed in the pushtowards new treatments and a cure.

Scientific Session Topics:Clinical Trials in Progeria:TheAmerican and European teamsconducting the world's first Progeriaclinical drug trials opened the scientificpresentations. U.S. trial PrincipalInvestigator Mark Kieran (Dana-Farber Cancer Institute, Boston) andtrial co-coordinator Leslie Gordonpresented an overview of trial design,baseline analyses, and toxicity, pharma-cokinetics, and other aspects of the FTI clinical trial, designedto create a comprehensive baseline and detailed clinicaldescription of Progeria.Marie Gerhard-Herman (BrighamandWomen’s Hospital, Boston) described the dramaticvessel wall abnormalities in Progeria, and Catherine Gordon

(Children’s Hospital Boston (CHB))presented growth and bone health as adistinct skeletal dysplasia which showssome unique abnormalities throughtesting during the clinical trial.NicolleUllrich (CHB) discussed her novelfindings on the natural history ofneurovascular disease and strokein Progeria. Finally,Nicolas Lévy(University of Marseille, France)presented exciting preliminary resultsfrom their Phase II treatment trial forProgeria and laminopathies withpravastatin and zoledronic acid, the twonon-FTI drugs involved in the tripledrug trial (see page 4).

From April 11-13, PRF held its 6th Scientific Meeting at theSeaport Hotel andWorldTrade Center in Boston, MA. Arecord 140 attendees congregated from 10 different countriesto hear expert oral presentations and view a record-breaking36 poster presentations. Doctors and scientists - who oftenwork in separate worlds, either in the clinic or in the lab -inspired one another as they came together to share cutting-edge findings and directions for future research. The depthand breadth of research into Progeria grows stronger withevery meeting. Speakers included leading scientists in thefields of heart disease, aging, genetics, and lamins.

Workshop Organizers:Leslie B. Gordon, MD, PhD, Medical Director, The ProgeriaResearch FoundationFrank G. Rothman, PhD, long-standing member of the PRFMedical Research Committee, and Professor and ProvostEmeritus at Brown University.Robert D. Goldman, PhD, StephenWalter Professor andChair of the Department of Cell and Molecular Biology at theFeinberg School of Medicine at Northwestern University, andformer President of the American Society of Cell Biology.George Martin, MD, Professor Emeritus of Pathology andDirector Emeritus of the Alzheimer's Disease Research Centerat the University ofWashington School of Medicine, ScientificDirector of the American Federation for Aging Research andformer President of the Gerontological Society of America.

Tom Misteli, PhD, Director of the Cell Biology of GenomesGroup at the National Cancer Institute, NIH.

The stage was set during the first evening with a ProgeriaFamily Panel, moderated byWall Street Journalist Amy

Dockser Marcus. Researchershad a unique chance to meetsome of the people their workcould help:Hayley Okines andher parents,Mark and Kerry,from England;Devin Scullion,along with his mom Jamie andstep-dad Shawn, from Canada;and Zach Pickard, with his

parents Tina and Brandon, from Kentucky. Hayley, Devin, andthe adults talked about what it's like to live with Progeria, and

Aging, Cardiovascular Disease, and Progeria: George Martin(University ofWashington) addressed unanswered questions

regarding the pathogenesis of the vascu-lar pathology associated with normativeaging and Progeria. Elizabeth Nabel(Brigham &Women’s Hospital, Boston)described the commonalities betweencardiovascular disease in Progeria and theaging population as demonstrated in bothprogeria mouse models and in humanpathology specimens.Michael Gimbrone,(PRF grantee, Brigham &Women’sHospital) described the importance ofendothelial cell influence on heart diseasein Progeria and on normal aging.PRF grantee ThomasWight (BenaroyaResearch Institute at the Univ. of Washing-ton) presented his key findings on the

Progeria extracellular matrix integrity. Finally,Yosef Gruenbaum,(Hebrew University, Israel) talked about drug and geneticmanipulations in a new lamin worm model.

Lamin Biochemistry and Pathophysiology:Lamin is the normal protein counterpart to progerin, whichcauses disease in Progeria. The more we understand lamins,the better we can understand Progeria. In this session, formerPRF grantee Robert Goldman (Northwestern U., Chicago)addressed lamins as essential building blocks of nucleararchitecture.Ueli Aebi, (Univ. of Basel,Switzerland) presented the structure andassembly of wild-type and disease variantsof human lamins A/C. PRF grantee KrisDahl, (Carnegie Mellon University, PA)presented her data on the multi-scalemechanical changes in progerin-expressingcells.Maria Eriksson, (Karolinska Institute,Sweden) demonstrated the effects ofstem cell depletion in a mouse model ofProgeria. Finally, PRF grantee BrycePaschal, (U. ofVirginia) presented hisdiscoveries on defects in the Ran GTPasesystem in HGPS.

Cutting Edge Strategies for Research and DiscoveryPRF grantee Tom Misteli, (National Cancer Institute, NIH)brought us a glimpse of the future, with a thrilling presentationon the status of drug development in Progeria. Fyodor Urnov,(Sangamo Biosciences, CA) then took us to the realm ofgenetic therapies for Progeria by proposing we apply humangene editing with engineered zinc finger nucleases to treatProgeria in the future. PRF grantee William Stanford, (Univ.ofToronto, Canada) then brought us to the cutting edge bydeveloping induced pluripotent stem cells (iPS cells) inProgeria and Laminopathies, which will be invaluable forstudying Progeria in the near future. Finally, PRF Medical

Nicolas Lévy, MD,PhD, Professor ofHuman andMolecular Genetics,head of the MedicalGenetics Departmentand of the InsermResearch Center, andDirector of the FrenchNational Institute forRare Diseases.

Thanks to all of thisyear's workshopattendees for becomingpart of the Progeriaresearch community –you are an incrediblydedicated group ofscientists. Yourdiscoveries areour past, and willbe our future.”

- PRF Medical DirectorDr. Leslie Gordon

Sam and Devin, both 13 yearsold, chat during the welcomingdinner.

THE MAX AND VICTORIA DREYFUS FOUNDATION, INC.

Research Committee member JudyCampisi, (Buck Institute for Age Researchand Lawrence Berkeley National Labora-tory, CA) brought her expertise to bearwith new insights and new targets forProgeria, aging and the inflammation thataffects them both.

•Young investigators took the stage, withtwo poster abstracts were elevated to oralpresentations.Giovanna Lattanzi, (Institutefor Molecular Genetics, Italy) presenteddata on prelamin A in diverse tissues,What happens in healthand disease? Ylva Rosengardten, (Karolinska Institute, Sweden)presented her work on Embryonic expression of the HGPSmutation in epidermis.

•The Poster session, boasting 36 cutting edge projects,displayed the many new directions Progeria research isheaded in. Congratulations to John Graziotto (Mass. GeneralHospital, Charlestown), who won best basicscience poster on “Lamin A and ProgeriaDegradation: Influence of Farnesyl-transferase Inhibitors,” and to KellyLittlefield (CHB) who won best clinicalposter on “Progeria ClinicalTrials: PatientLife at Children’s Hospital Boston.”

“This workshop clearly set a new bench-mark,” saidMichael Gimbrone. “It was oneof the most interactive and informativemeetings of its kind I have ever attended.The spirit of the meeting was remarkablycollaborative, upbeat and inspiring.

Thank you to our co-funders

It is PRF’s privilege to thank the workshop organizers for their insightful andinvaluable contributions to this event (left to right): Bob Goldman, FrankRothman, Leslie Gordon, Tom Misteli and George Martin

Elizabeth Nabel,MD,President of BrighamandWomen's/Faulkner Hospitals,Professor of Medicine,Harvard MedicalSchool, and formerDirector of theNational Heart, Lung,and Blood Instituteat NIH.

Ueli Aebi MA, PhD,Director of the M.E.Müller Institute forStructural Biology atthe Biozentrum.,University of Basel,Switzerland.

Judith Campisi, PhD,Professor and SeniorScientist at The BuckInstitute for Age Re-search in Novato, CA.

Michael Gimbrone,MD,Ramzi S. CotranProfessor of Pathologyat Harvard MedicalSchool, Chairman ofthe Department ofPathology at BrighamandWomen's Hospital.

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Here is just a sampling of the many recent publications onProgeria that now appear on a regular basis. The average annualnumber of articles since 2002 is 25, whereas in the previous50 years it was just 2 — now that’s progress!

Prior PRF Grantees Provide More Evidence that FTIs Act onFarnesylated ProgerinResearchers believe FTIs help alleviate Progeria symptoms becausethe drug prevents the protein progerin from becoming farnesylated.But what if FTIs actually work because they’re preventing thefarnesylation of other proteins? Researchers from UCLA and theUniversity of Kentucky set out to find the answer. The team createdmice that made only unfarnesylated progerin. As expected, the micedeveloped Progeria-like symptoms. When treated with FTIs, theydidn’t improve. If FTIs work by acting on proteins other thanfarnesylated progerin, the authors reasoned, then the mice wouldhave improved. So the key to FTIs’ benefit must be in the mice’smissing biochemical step.

Yang SH,Chang SY,Andres DA, Spielmann HP, Young SG, Fong LG.“Assessing the efficacy of protein farnesyltransferase inhibitors inmouse models of progeria.” J Lipid Res. 2010 Feb;51(2):400-5. Epub2009 Oct 26.

Art Meets Science in ‘Benjamin Button’ StoryIf you’ve ever wondered about the connection between Progeriaand the movie The Curious Case of Benjamin Button, this paper mayinterest you. In the movie and the F. Scott Fitzgerald story thatinspired it, Button is born looking elderly and then ages backwards.Dr. Maloney argues that Fitzgerald based this fictional malady onProgeria. After outlining Progeria’s dental, jaw, head and necksymptoms, the author wonders whether Progeria offers “a rare andprecious opportunity” to study natural aging on fast-forward.

Maloney, W.J.“Hutchinson-Gilford Progeria Syndrome: ItsPresentation in F. Scott Fitzgerald's Short Story ‘The Curious Case ofBenjamin Button’ and Its Oral Manifestations.” J. Dent. Res 2009 Oct88 (10): 873-6.

Progeria’s Link to Normal Aging:An Impressive Detailing of the EvidenceProgeria is caused by a genetic mutation in the gene called LMNA,pronounced“lamin-a”. Studies of the worm C. elegans and the fruitfly D.melanogaster have provided more evidence that lamin isinvolved in aging. Because these organisms have short lifespans andcan be studied in large quantities, researchers can more easily studyhow changes in the nuclear lamina - of which lamins are majorcomponents - affect lifespan. The authors’ detailed review of theevidence that lamins are involved in aging also includes their ownoriginal results. Eriksson is the co-discoverer of the Progeria gene,along with PRF, and her laboratory at the Karolinska

Institute in Stockholm remains a major research lab work-ing on Progeria.

Rodríguez S, Eriksson M.“Evidence for the Involvement ofLamins in Aging.”Curr Aging Sci. 2010 Jan 2. [Epub aheadof print]

Progeria Research a HotTopic atConferences NationwideMany organizations now seek PRF’s participation intheir conferences, where PRF spokespeople share theirsuccess stories so others may learn from them, anddescribe exciting new ventures to prospective partners.Here are the latest presentations given:

Arlington,VA:PRF Medical Director Dr. Leslie Gordonand PRF Board Chairman Dr. Scott Berns were featuredspeakers at the Pharmaceutical Research and Manufacturersof America (PhRMA) annual meeting in March. In additionto Progeria being mentioned by other featured speakers

including NIH Director Francis Collins and PhRMAPresident and CEO BillyTauzin, the co-founders of PRFurged attendees to partner with PRF to develop newdrug treatments.

NewYork, NY: Dr.Gordon and PRF Executive DirectorAudrey Gordon presented an overview of PRF andstrategies for drug development at the FasterCuresPartnering for Cures conference in December, a first-of-its-kind meeting that brought together philanthropy,medicalresearch foundations, and the biopharmaceutical industryin an effort to forge collaborations, featuring nonprofitleaders who are producing dramatic results for patients.

Bethesda, MD:On Jan. 10th, 2010,Dr. Leslie Gordon spoke atthe Genetic Alliance (GA) meeting entitled,Genetic Alliance Boot-camp on Disease Registries.Addressing the topic of the need forregistries and cell bank repositories to accelerate research in rarediseases,Dr.Gordon presented PRF’s International Registry andCell &Tissue Bank programs as successful models to emulate.

Bethesda, MD:At theNIH Office of Rare Diseases Researchworkshop,Advancing Rare Disease Research:The Intersection of Pa-tient Registries, Biospecimen Repositories and Clinical Data held Jan.11 -12th, 2010,Dr.Gordon was part of a panel that included

What’s News in Progeria Research?representatives from the National Organization for Rare Disor-ders and GA. She presented PRF as a role model for conduct-ing successful translational research in rare diseases, anachievement PRF is now widely known for.

Educating the Medical Community about Progeria inMedicalTextbookDr. Leslie Gordon is a contributing author for the 7th editionof the Brocklehurst’sTextbook of Geriatrics and Clinical Gerontology.Popular with generations of practitioners, this textbook is anauthoritative reference in the field of geriatric care.

Scott Berns, Merck CEO Richard Clark, Leslie Gordon andSigma-Tau Pharmaceuticals CEO Gregg LaPointe.

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PRF AwardsThree More Research Grants!As of May 2010, PRF has funded 29 grants - over $2 million forProgeria-related research projects performed in 4 countriesand 13 U.S. states! We continue to solicit proposals world-wide, in our ongoing effort to support the research that willbring us to a cure. All projects are carefully evaluated by ourMedical Research Committee and Board of Directors.

Kris Noel Dahl, PhD, Carnegie Mellon University, Pittsburgh, PA“Quantification of progerin recruitment to membranes:The role of farnesylation and local electrostatic interactionsin HGPS”

The devastating structural and functionalcellular changes associated with Progeria,appear to be caused by the protein namedprogerin. Progerin maintains its lipid propertiesand therefore remains embedded in the nu-clear membrane,where it can be extremelydamaging. Dr.Dahl’s work will quantify andcharacterize the membrane interactions of

progerin, compared to its normal counterpart protein,lamin A. With a better understanding of the role of theseprotein-membrane interactions,we hope to develop strategiesfor treatment through lipid mediators, such as cholesterol.

Dr. Dahl is anAssistant Professor in the Departments ofChemical Engineering and Biomedical Engineering at CarnegieMellon University. In Dr.Dahl’s lab, they study the biophysical andmechanical properties of the nucleus at the molecular, cell andtissue levels.

Project Collaborator:Mathias Lüeche, Professor of Physics andBiomedical Engineering, Carnegie Mellon; Project Postdoctoralfellow:PeterYaron.

Jason Lieb, PhD, University of North Carolina, Chapel Hill NC“Interactions between genes and lamin A/progerin: a windowto understanding Progeria pathology and treatment”

Dr. Lieb hypothesizes that abnormal binding or dissociationof genes with lamin A or progerin in HGPS cells causesmisregulation of genes, ultimately leading to HGPS. Using ChIP-seq method, his laboratory will assess which genes interact withnormal lamin A and progerin across the entire human genome.

He aims to identify genes that abnormallybind to or detach from lamin A or progerinin HGPS cells, both with and withoutfarnesyltransferase inhibitor (FTI) treatment.The data will allow his team to predictsignaling pathways that may be responsiblefor HGPS, provide a better understanding ofhow FTIs treat progeria, and provide clues

towards new treatments which may target pathways that FTIsdo not affect.

Dr. Lieb is an Associate Professor in the Department ofBiology and Carolina Center for Genome Sciences.Theprojects in his laboratory are united by the scientific goalof understanding relationships between DNA packaging,transcription factor targeting, and gene expression.

Project postdoctoral fellow:Dr. Kohta Ikegami.

Tom Misteli, PhD, National Cancer Institute, NIH, Bethesda,MD “Identification of small molecule modulators ofLMNA splicing”

Dr. Misteli and his team are bringing drugdevelopment to the field of Progeria. Incollaboration with the NIH ChemicalGenomics Center, Dr. Misteli has created ahigh throughput assay to discover chemicalsthat interfere with progerin production.Thisassay has the power to reveal drugs andchemicals that actually rid the cell of progerinaltogether. It is the first step in drug discovery that could leadus to novel treatments and a cure.

Dr. Misteli is a Senior Investigator at the National CancerInstitute where he heads the Cell Biology of Genomes Groupand the NCI Cellular Screening Initiative. He is a member ofthe NCI Center for Excellence in Chromosome Biology, andhas pioneered technology to analyze the function of genes inliving cells. This is the second grant awarded to Dr. Misteli fordrug development in Progeria.

Project Participants:Douglas Auld, PhD; Paola Scaffidi, PhD;Sara Snyder, PhD; and Pilar Saladores, BSc.

Kris Dahl

Jason Lieb

Tom Misteli

PPuubblliiccaattiioonnss && RReesseeaarrcchh::A major goal of PRF is to promote awareness about Progeriaand the progress being made in the field of Progeria research.Both clinical and basic scientists have accessed the PRF grants,cells and tissues, and database; their discoveries are publishedin top-notch scientific journals. The average annual numberof scientific publications on Progeria since 2002 is more than12 times that of the previous 50 years.

WWeebbssiittee//PPuubblliicc AAwwaarreenneessss::ProgeriaResearch.org provides visitors with access to the latest information on Progeria research, support, and education forfamilies and caregivers, and enjoys an average of 15,000 visitorsper month. PRF’s newsletters reach nearly 10,000 people in 52countries. PRF’s story has appeared on CNN, The Dr. Oz Show,Primetime Live, Dateline, and The Today Show, and in Time andPeople magazines, The New York Times, The Wall Street Journal(front page!) and dozens of other widely-read media outlets.

PRF and its partner GlobalHealthPR recently launched a globalawareness campaign called FFiinndd tthhee OOtthheerr 115500,, to drive thesearch for unidentified children with Progeria worldwide byraising awareness of the disease among both the general publicand medical communities. The campaign has already helpedPRF to discover new families and children with Progeria whoneed our help.

PPrrooggeerriiaa FFaammiillyy OOuuttrreeaacchh––TThhee PPRRFF FFaammiillyy CChhaatt RRoooomm::

To further provide valuable resources for families of childrenwith Progeria, PRF has created a private Web site to help thefamilies get to know each other and develop a support networkwhere they can share concerns and ideas on how best to carefor their children.

AAuuddrreeyy GGoorrddoonn,, EEssqq..,, PPrreessiiddeenntt aanndd EExxeeccuuttiivvee DDiirreeccttoorr,, CCoo--FFoouunnddeerrAudrey Gordon, Esq. oversees all administrative aspects of The Progeria Research Foundation, including theBoard of Directors’ activities, fund-raising events, grant writing, medical research projects administration, andvolunteer programs.

LLeesslliiee BB.. GGoorrddoonn,, MMDD,, PPhhDD,, MMeeddiiccaall DDiirreeccttoorr,, CCoo--FFoouunnddeerrDr. Gordon co-founded The Progeria Research Foundation with friends and family after her son, Sam, was diagnosed with Progeria. As PRF’s medical director, Dr. Gordon oversees the Diagnostics Testing Program, Cell & Tissue Bank, and Medical & Research Database, and is a co-chair for the Progeria clinical drug trials. She is Associate Professor of Pediatrics Research at the Alpert Medical School of Brown University and Hasbro Children’s Hospital in Providence, RI, and a staff scientist at Children’s Hospital Boston and Harvard UniversityMedical School.

SSccootttt DD.. BBeerrnnss,, MMDD,, MMPPHH,, FFAAAAPP,, PPRRFF CChhaaiirrmmaann ooff tthhee BBooaarrdd,, CCoo--FFoouunnddeerrDr. Berns, Sam’s father, is a co-founder of The Progeria Research Foundation, and serves as the Chairman ofthe Board. He is a Board-Certified Pediatrician and Clinical Professor of Pediatrics at the Alpert Medical Schoolof Brown University. He is also Senior Vice President of Chapter Programs at the March of Dimes.

TTiinnaa,, BBrraannddoonn,, BBrriittttaannyy,, aanndd ZZaacchh PPiicckkaarrdd,, PPRRFF’’ss AAmmbbaassssaaddoorr FFaammiillyyIn January 2010, the family of 3 year-old Zach Pickard was named PRF’s Ambassador Family. The Pickards live inLexington, Kentucky, and are an integral part of PRF’s efforts to raise public awareness, involve other familiesin our programs, and raise funds for research. We appreciate the time and effort they put into these importantactivities.

WWhhoo’’ss WWhhoo aatt PPRRFF??

MMeeddiiccaall && RReesseeaarrcchh DDaattaabbaassee::The Database is a centralized collection of medical informationfrom Progeria patients worldwide. The data is rigorously analyzedto help us understand more about Progeria and devise treatmentrecommendations. Database analysis was critical in determiningthe primary clinical outcome parameter for the first-ever Progeriaclinical drug trial, and in 2010, this analysis contributed to PRF’scomprehensive healthcare recommendations handbook onProgeria aimed at optimizing quality of life.

DDiiaaggnnoossttiicc TTeessttiinngg::PRF developed a diagnostic testing program for Progeria in thewake of the 2003 gene discovery so that children, their familiesand medical caretakers can get a definitive, scientific diagnosis.This can translate into earlier diagnosis, fewer misdiagnosesand early medical intervention to ensure a better quality of lifefor the children.

SScciieennttiiffiicc WWoorrkksshhooppss oonn PPrrooggeerriiaa::PRF has organized six scientific conferences that have broughttogether scientists and clinicians from all over the world toshare their expertise and cutting edge scientific data, and fostercollaboration in the fight against this devastating disease.

RReesseeaarrcchh GGrraannttss::PRF has awarded 28 research grants totaling over $2 millionthrough peer review by our volunteer Medical Research Commit-tee. Awards of up to $100,000, for up to two years, have allowedinnovative new research in Progeria to thrive.

978-535-2594 q info@progeriaresearch.org q www.progeriaresearch.org

The Quick Facts are updated every few months and are available at www.progeriaresearch.org/quick_facts

Mission: To discover the cause, treatment, and cure for Hutchinson-GilfordProgeria syndrome and its aging-related disorders.

Together we will find the cure.

WWhhaatt iiss PPrrooggeerriiaa??

Progeria, also known as Hutchinson-Gilford Progeria Syndrome(HGPS), is a rare, fatal genetic condition characterized by anappearance of accelerated aging in children. AAllll cchhiillddrreenn wwiitthhPPrrooggeerriiaa ddiiee ooff tthhee ssaammee hheeaarrtt ddiisseeaassee tthhaatt aaffffeeccttss mmiilllliioonnss ooffnnoorrmmaall aaggiinngg aadduullttss ((aarrtteerriioosscclleerroossiiss)),, bbuutt iinnsstteeaadd ooff ooccccuurr--rriinngg aatt 6600 oorr 7700 yyeeaarrss ooff aaggee,, tthheessee cchhiillddrreenn mmaayy ssuuffffeerr ssttrrookkeessaanndd hheeaarrtt aattttaacckkss eevveenn bbeeffoorree aaggee 1100.. Remarkably, the intellectof children with Progeria is unaffected, and despite startlingphysical changes in their young bodies, these extraordinarychildren are intelligent, courageous, and full of life.

WWhhaatt iiss PPRRFF??

The Progeria Research Foundation (PRF) was established in1999 by the parents of a child with Progeria, Drs. Leslie Gordonand Scott Berns, and many dedicated friends and family whosaw the need for a medical resource for the doctors, patients,and families of those with Progeria, and for funding of Progeriaresearch. Since that time, PRF was the driving force behind thediscovery of the Progeria gene, and has developed programs andservices to aid both those affected by HGPS and the scientiststhat conduct Progeria research. Today, PRF is the only non-profitorganization solely dedicated to finding treatments and thecure for Progeria. PRF is hailed as a model for disease-researchorganizations and a prime example of successful translationalresearch, moving from creation, to gene discovery, to treat-ment trials in just 10 years.

Q U I C K F A C T S a s o f A P R I L 2 0 1 0

PRF BY THE NUMBERS:Children living with Progeria: 6633 cchhiillddrreenn iinn 3300 ccoouunnttrriieess

Children tested through the PRF Diagnostic Program: 8855

Grants funded since PRF was established: 2299

Cell lines in the PRF Cell & Tissue Bank: 113333

Children participating in the PRF Medical & Research Database: 9922

TToottaall DDoollllaarrss RRaaiisseeddffrroomm 11999999 ttoo MMaarrcchh 22001100:: $$88,,332233,,55881185-90% of PRF’s annual expenses are consistently dedicated to its programs and services. The supportwe have received made the Progeria gene discovery,the Progeria clinical trials and all of our other extraor-dinary progress possible. With the continued help ofour supporters, we will win this race against time andfind treatments and the cure for these special children– and perhaps also help millions who suffer from heartdisease and other, aging-related conditions.

PPRRFF’’ss PPrrooggrraammss && SSeerrvviicceess

FFiirrsstt--EEvveerr PPrrooggeerriiaa CClliinniiccaall DDrruugg TTrriiaallss ffoorr PPrrooggeerriiaa::PRF funded and co-coordinated a $2 million, first-ever clinicaldrug trial for Progeria that took place in Boston with partnersChildren’s Hospital Boston (CHB), Dana-Farber Cancer Institute andBrigham & Women’s Hospital. The trial drug is called a farne-syltransferase inhibitor, or FTI, a drug that has shown greatpromise in the laboratory and in animal models. The trial enrolled28 children from 16 countries, ages 3 to 15 years. Trial results areexpected to be published in 2010. If the drug proves effective,it will be a remarkable step forward in the pursuit of a cure.

Since the start of the first trial, researchers identified two addi-tional drugs that, when used in combination with the currentFTI drug being tested, may provide an even more effectivetreatment for children with Progeria than the single drug. PRFmoved quickly to explore these additional treatment options.PRF and CHB began a second clinical trial for Progeria in August2009. The “Triple Drug Trial” is much larger than the first, involving 45 children from 24 countries, speaking 17 differentlanguages.

CCeellll && TTiissssuuee BBaannkk::

The PRF Cell & Tissue Bank provides medical researchers withgenetic and biological material from Progeria patients and theirfamilies, so that research on Progeria and other aging-relateddiseases can be performed to bring us closer to finding thecure. PRF has collected an impressive 83 cell lines from affectedchildren worldwide (with ages ranging from 2 months to 17years), and 50 lines from their immediate relatives.

10 11

Hundreds RIDE THE WAVE at PRF’s signature“Night of Wonder” gala!In Cambridge, Massachusetts, nearly 400 people celebratedTHE WAVE of progress and the tremendous advancementsPRF is making toward our ultimate goal of a cure for Progeria.

ManyThanks to ourGenerous Sponsors…

Alice & Lew BernsLeslie Gordon & Scott BernsSandra Bresnick & Peter ArmenioFran & David ElovitzThe Flynn FamilyBarbara & Burt GordonElliott and MarjorieHillback FoundationLori & John LedouxTherese & Kurt MeldenRobyn &Tom MilburyGretchen & Bob MorrisonKim & Joe ParatoreDebbie & David PonnElaine & SkipWohlner

Gala co-chairs Vickie Robbin and Debbie Michienziewere all smiles at the evening’s success.

Rabbi and Suzette Kushner and friends.

Debbie Ponn is surprised andthrilled to be this year’s AmyAward recipient, in recognition ofher all-around support of PRF.

A huge crowd from Foxboro, MA attended.

Kim and Kevin King enjoy theopening reception with theGordon-Berns family: Sam, Leslieand Scott.

Jim Goh flew in fromColorado and brought hisdaughter Lauren, whoattends Harvard.

More details and photos at www.progeriaresearch.org/ridethewave200912

Somany people now look forward to annualPRF events in their communities, thanks toour dedicated families,chapters and othersteadfast supporters. Visit our web site to seeif there are any upcoming events in your area.

Another Amazing Year at YearOne in Georgia!For the 4th year in a row, theYearOne Hot RoddersChildren’s Charity teamed up with automotive design guruChip Foose at theBraselton Bash carshow. YearOne hasraised hundreds ofthousands ofmuch-needed dol-lars to help find acure for Progeria.We hope to see youat this year’s event onSeptember18th!

Kaylee’s 5K Course in Ohio Breaks all Records!Raising an astonishing $58,000, last year’s race was thebiggest yet. On a sunny day in October, hundreds ofpeople – including three other families – came out to

support the Halko familyand children withProgeria aroundthe world.

4th Annual Walk in Honor of Kris McGuinnessFilled with Massachusetts SunshineHow wonderful that Kris is honored every September byfamily and an ever-growing number of friends who join ina 2-mile walk around Kris’ hometown of Middleboro,Massachusetts. Hundredsenjoyed the sunny morn-ing, refreshments, raffles,music and the companyof others, all to supportProgeria research.

Kaylee gives the “peace” signas she and her friends Zach,Cam and Lindsay hang outafter the race. The families ofall 4 children hold races in theircommunities – amazing!

Annual & Chapter Special Events Abound!

The 1st Annual Ride for Progeria in Canada took place onJuly 4th, 2009 with motorcycles riding from Listowel to Kincardine,Ontario to promote awareness for Progeria. A bigTHANK YOUto Amanda Lynn Mayhew, event organizer and creator of FytnessFanatik Magazine, which includes promotions for PRF in everymonthly issue. This year’s ride is June 26th and includes a concert,photo shoots and more. Benefits include friends, fun and bugs inyour teeth! Details at www.fytnessfanatik.com/ride

Rain Doesn’t Dampen PRF’s 8thAnnual International Race forResearch in Peabody, MAIt’s official: PRF supporters are socommitted, they’ll show up no matterwhat the weather is!What a day -hundreds braved the rain to make thisrace a memorable one. The after-partyinside City Hall kept everyone dry andcheerful; we had more participants,sponsors and donors than ever; andPRF’s executive director met her goalof a first-time 5K run. This year’s raceis September 11th – see you at thefinish line!

2nd AnnualKilometers forCam 5k Raises$30,000 inMichigan!The SouthwestMichigan chapter isnow an expert atrace organizing!The group held its5k Run /Walk and

3k FunWalk last September along scenic Lake Michigan with livemusic, silent auction, games and face painting. Join them this yearon September 25th for a guaranteed day of fun. Details atwww.iamcam.org/kmForCam

Chip, Sam and KenneyWayne Shepard gettogether at the poker tournament.

Sam and Jesper had a blast!

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Over $260,000 was raised – howWONDERful!

Our LatestMiracle Makers -Helping to Make the Miracle of a Cure Happen

AMiracle Maker is a volunteer who raises awarenessand money for PRF by running a fundraiser or otheractivity to help PRF carry out its mission. Enjoythese wonderful stories of creative and generouspeople who are making a difference in the lives ofchildren with Progeria.

Aunt Emily’s Endless DevotionMotivated by her nephew Cam, EmilyHoward is one of the family’s hardest-working fundraisers. She has set upcollection cans, hosted bake salesand poker games, collected racesponsorships and much more.How wonderful to have such closefamily ties!

AAA:Another Amazing Aunt!Congratulations to Cameron's great-aunt Jody, who ran herfirst half-marathon in November and raised nearly $7,000!“I was awe-inspired by everyone’s generosity.Yes, we knew wecould count on our friends and family, but the outpouring fromcomplete strangers was so touching,” said Jody. And so is herdedication to her grand-nephew…

Blogging About ProgeriaAmanda, a junior broadcast journalism major at QuinnipiacUniversity in Hamden, CT, produced a blog called “Ensurea Cure” as a school project. It includes photos, podcasts and a

video interview withPRF’s Director.Check it out atensurecure.wordpress.com.Great job,Amanda, andremember to feature uswhen you’re a famousnews anchor!

Teen Devises “Crafty”Way to Support PRFThirteen-year-old Allie from Melville,NY, learned of Progeriawhen she saw“Hayley’s Story” last spring. That summer at camp,while making bracelets, Allie decided to turn the craft into afundraiser. She raised $200 from selling her colorful bracelets,and sent PRF several to give to the children to“put a smile on achild’s face.” We’re lucky to have such a talented, generous andthoughtful young lady!

Couples Celebrate theirWeddings with PRFBrett & Michelle Dressler of Cornelius, NC are long-timesupporters who decided to honor PRF on their wedding day.In lieu of gifts, they asked their guests to make a donation toPRF. And across the Atlantic,Andrea & Letizia Millioni ofLondon made a generous donation in honor of their marriage.

To the new Mr. and Mrs. Dressler and Mrs. & Mrs. Millioni:Congratulations on your unions and thank you for includingPRF in such a special celebration!

Third Graders Show theSpirit of GivingStudents atTemple Beth Shalomin Peabody, MA collected tzedaka(“charity”) money, and chose todonate the funds to PRF. “Thekids were moved by the fact thatsomeone their age could havethis disease,” said teacher Barri.And we are moved by theirkindness and generosity.

October 2009: Student Holds Bake Sale andVolunteerswith California ChapterAidan, from Santa Barbara High School in California, is a friend ofthe Foose family. She has volunteered to help with several CA

Chapter events and has raised moneyon her own as well witha bake sale at the show grounds whereshe rides her horse - running back andforth between the show arena and thebake sale table! Thank you,Aidan, forbeing such a great volunteer!

Students Organize Coins for Cure CompetitionAfter seeing a show onTLC about Progeria, Kellye andCheyenne held a Coins for Cure Challenge at their school inIdaho, offering the winning class a pizza party. The class thatwon collected over $100 in less than a week! The girls alsoheld a bake sale, using PRF balloons and brochures to spreadthe word.“It was such an accomplishment for us, we are soproud of what we did for Progeria!”And so areWE!

Pedaling for Progeria!Kim Russell, a spinning instructor at Boston Sports Clubs,charged members to participate in special “Pedal for Progeria”spin classes. The group raised $580 and got a great workout aswell - Pedal on, Kim!

Amanda and her Professor BrettOrzechowski review her blog.

Aidan on her show horse.

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More Special Events

PRF Leaders and Special Guest Sam Berns Appearon SpikeTV

PRF Executive DirectorAudrey Gordon,Chairman of the Board Dr.Scott Berns, andScott’s son Sam appeared in a segmentabout Progeria and PRF during SpikeTV’sshowMuscleCar in February. The piece

was filmed in September at the CA chapter’sYearOne event.MuscleCar is an automotive how-to program that airs everyweekend and reaches more than 4 million viewers. Thanks tosteadfast supportersYearOne,Chip Foose and RTM Productionsfor helping to drive awareness!

Everyone’s aWinner at PRF’s 5th AnnualPoker for Progeria Game

In March, nearly 120people had a blastplayingTexas Hold’em Poker and BlackJack, bidding onfabulous auction items,eating, drinking, andsocializing in Peabody,MA at this increasinglypopular event. Manythanks to long-timeevent chair MauraSmith, the many spon-sors, volunteers andfood donors, andeveryone who came–you helped raisenearly $9,000!

The excitement grew when the final table of ten gathered to compete forthe top cash prizes.

(left to right) Brittany Carnegie (whohelped sell loads of raffle tickets!), BostonBruins player Milan Lucic, and former NHLplayer and current Director of Develop-ment for the Boston Bruins FoundationBob Sweeney all came to support Sam,who is appropriately dressed for theoccasion! Also pictured (center) is PRFExecutive Director Audrey Gordon.

Sisters Raise Awarenessand Donations at“Founder’s Day”Caitlin and Lauren ofFoxboro,MA hosted a boothat their city’s Founder’s Dayevent after learning aboutProgeria and PRF. The girls

passed out brochures and held a raffle for beautiful baskets theyput together. Thanks, girls - you’re a real find for PRF!

Dorm Students Paint Murals in Honor of PRF!The University of Nebraska’s Residential EnhancementCommittee, in charge of improving dorm life for students, held afundraiser in their tornado shelter.Blocks of walls were “sold” tostudents,who then painted a muralon that space. This is definitely oneof the more creative ways to raisemoney! “It was cool to spread theword while we were painting”, saidevent chair Colleen Settle.“I chosePRF because it's a very serious dis-ease, but every Progeria child I’veseen has a tremendous spirit,”Manythanks to the students for theirartistic support.

Interact Club chooses PRFfor DonationThe Berwick, Pennsylvania SeniorHigh School Interact Club (a sister club to Rotary) is a serviceclub that holds various fundraisers each year, then providesdonations to many organizations worldwide. Having watcheddocumentaries about Progeria, the group chose PRF to receive adonation of $500! Our thanks to Debbie Kern, the Interact ClubAdvisor, and all the students who chose to support PRF

Canadian GirlsTurn Project into FundraiserInspired by a documentary on Hayley of England, Lindsay andSara of Woodland Christian High School in Ontario chose to dotheir Biology project onHutchinson-GilfordProgeria Syndrome.Whilereading PRF’s web site, theylearned of the fundraisingefforts for the clinical trial,and decided to help out.The girls organized a bake sale and created handmade braceletsto sell, raising $185! Thanks, Lindsay and Sara, for going beyondthe schoolwork to support the children.

One of the many walls painted inhonor of PRF.

Please join our ever-growing group of heroes.Working together in a variety of ways, weWILL find the cure!

15

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To learn more about how you can help, contact us:

info@progeriaresearch.org978-535-2594

Hot off the Presses!Progeria Handbook Now AvailablePRF is proud to present the first handbook dedicated to the care ofchildren with Progeria. With contributors from Brown University, HasbroChildren’s Hospital, and Harvard University Hospitals, the 100-pagehandbook contains a wealth of information for families and medicalcaretakers. From basic health facts to daily care recommendations toextensive treatment guidelines, the handbook will help answer manyquestions for children with Progeria throughout the world.

The handbook is also available to download atwww.progeriaresearch.org/patient_care

Thanks to theAmerican Legion ChildWelfare Foundation andCVS Caremark for providing grants that helped make thisproject possible!

Happy Mother’s Day