WE ARE FUNDRAISING FOR MILES AND THE PROGERIA RESEARCH FOUNDATION!

 English (svensk oversattning foljer)

 

Miles

"Miles for Miles" is a global story of an amazing little boy, Miles.  Miles is Swedish-American, born in Rome in 2006 and now living in Stockholm with his parents and adoring baby sister. Claudia and Tommy were very fortunate to get to know Miles through his mum a good friend of theirs.  Miles is a wonderful and smart little boy who charms everyone he meets with his smile and enthusiasm for life.  He springs through life and like many 4 year olds he’s currently obsessed with dinosaurs and lego. Although in most ways Miles is a normal little boy, he is different in one very big way. 

 

 The disease

Miles was diagnosed with Progeria, a fatal genetic disease characterized by accelerated aging.  He is 1 of only 63 children in the whole world with Progeria and is the only child with Progeria in the whole of Sweden’s history. 

This deadly disease becomes apparent at around 18-24 months of age when children with Progeria, who are born looking healthy, begin to display many characteristics of accelerated aging. These children fail to grow, lose body fat and hair, their skin ages, they experience stiffness of joints, and hip dislocations. All children with Progeria die of heart disease and/or stroke at an average age of thirteen years. The intellect of children with Progeria is unaffected, and despite the often startling physical features, they are just like any other little kid.  

 

The search for a cure

The Progeria Research Foundation (PRF) was established in 1999 by the parents of a child with Progeria and many dedicated friends and family. Since that time, PRF was the driving force behind the discovery of the Progeria gene, and has developed programs and services to aid both those affected by Progeria and the scientists studying Progeria. Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria and it serves as an amazing resource for families of children with Progeria.  Please see www.progeriaresearch.org for additional information about this devastating disease and the foundation dedicated to it.  The PRF is now running drug trials to find a cure for the disease!  Miles has been given the opportunity to participate in the trial with the hope that the medications will ease the disease and one day eradicate it! 

 

How we are helping

"Miles for Miles" was created by a caring childhood friend of Miles’ mother in the USA. “Miles for Miles” is dedicated to raising money through marathons and other sports events to fund the medical trials and PRF to make sure that Miles and other kids like him are given the best opportunity to stay as healthy as possible.  The “Miles for Miles” Swedish team will run the Lidingoloppet (the world’s biggest cross country run) on 25 September 2010 to raise awareness for Progeria and all funds raised will go directly to the PRF to fund the clinical trial for Miles and the other children with Progeria. 

 

Please consider donating any amount possible to this great cause, because a small donation goes a long way! For example, SEK350 (USD50) will pay for a month of Miles’ medication or SEK500 (USD70) will help cover the costs for Miles mandatory trips to PRF in the USA for testing and treatment.  Your help will ensure that Miles is able to participate in these unique clinical trials with the hope of slowing and eventually stopping the progression of the disease in his little body. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to help too! 

"Miles for Miles" Team - Stephanie Bunt (Miles for Miles Founder), Claudia Dahlgren (Organizer), Tommy Dahlgren (Runner), Asa Dahlgren (Runner), Johan Dahlgren (Runner)

Svenska

MILES FOR MILES PENGA INSAMLING

Miles

’Miles for Miles’ ar en global historia om en hapnadsvackande liten pojke Miles.  Miles foddes i Rom 2006 och bor nu i Stockholm med sin svenska pappa och amerikanska mamma och sin lilla syster.  Han ar en underbar och smart liten pojke som charmar varje manniska han moter med sitt stora leende och sin aptit pa livet.  Han tar sig an allting med stor entusiasm och som manga andra 4-aringar ar han helt besatt av dinosaurier och lego.  Aven om Miles i mangt och mycket ar en normal liten kille sa skiljer sig hans liv at pa en stor punkt.

Sjukdomen

Miles har blivit diagnosticerad med Progeria, en dodlig genetisk sjukdom som kannetecknas av ett paskyndat aldrande.  Han ar en av endast 63 barn i hela varlden med Progeria.  Denna dodliga sjukdom visar sig runt 18-24 manaders alder nar barn med Progeria, som fods friska, borjar att visa de tecken man forknippar med aldrandet.  Dessa barn har svart att vaxa till sig, de tappar sitt underhudsfett och har, deras hud aldras, de far stela leder och hofterna vrids ur led. Alla barn med Progeria dor av hjartsjukdomer och/eller stroke vid en genomsnittlig alder av 13 ar.  Intellektet pa barn med Progeria ar opaverkad och trots att de allt som oftast har synliga fysiska kannetecken ar de som vilket litet barn som helst. 

Letandet efer botemedlet

Progeria Research Foundation (PRF) grundades 1999 av foraldrarna till ett barn med Progeria och manga av deras hangivna vanner och familjemedlemmar. Sedan dess har PRF varit den drivande kraften bakom upptackten av progeria-genen och har utvecklat program och tjanster for att hjalpa och stodja dem som har sjukdomen samt de som forskar kring den. Idag ar PRF den enda ideella organisationen som ar fullkomligt dedikerad till att hitta behandlingar för, och botemedel mot, Progeria och tjanar som en ovarderlig resurs for familjer som har barn med Progeria. Se www.progeriaresearch.org for mer information om denna allvarliga sjukdom och organisationen som ar hangiven at den. PRF bedriver kliniska studier for att hitta ett botemedel mot Progeria! Miles har fatt mojligheten att delta i denna studie med hopp om att medicinerna kan mildra hans sjukdom och en dag bota den!

 

Hur vi kommer in i bilden

’Miles for Miles’ skapades av en mycket omtanksam barndomskamrat till Miles’ mamma.  ’Miles for Miles’ agnar sig at att samla in pengar genom Marathon och andra liknande sportevent for att pa sa vis betala for de medicinska undersökningar som Miles och andra barn, genom PRF, behover for att fa ett sadant vardigt liv som mojligt.

’Miles for Miles’ svenska team kommer att springa Lidingoloppet den 25 september 2010 for att uppmarksamma Progeria och alla pengar kommer oavkortat att ga till PRF for att sponsra Miles och andra barn med Progeria.  Varje liten donation kommer till nytta for detta andamal. Kom ihag: Manga backar sma.....

For att bara ta nagra exempel, 350kr racker till Miles medicinering i en manad och 500kr hjalper till att betala for Miles resor till PRF i Boston for att genomga tester och behandling.

Din hjalp kommer att se till att Miles kommer att kunna vara med i dessa unika kliniska studier som medfor en gnutta hopp om att sakta ned och forhoppningsvis stoppa fortskridandet av sjukdomen i hans lilla kropp.  Tack sa mycket for din hjalp – och glom inte bort att skicka detta vidare till vem som helst som du tror vill hjalper till. 

 

’Miles for Miles Team - Stephanie Bunt (Miles for Miles Founder), Claudia Dahlgren (Organizer), Tommy Dahlgren (Runner), Asa Dahlgren (Runner), Johan Dahlgren (Runner)