Time to give thanks…….


We recently had another amazing photoshoot with Summer lyn of Summerlyn Photography.....Summer has been part of our lives since Sophia has been 7 days old, and has blessed us with amazing photos for us to treasure always. Since Sophia's Trach surgery we have been feeling a bit more adventurous and decided to take this particular photoshoot to the beach!!!!! Sophia is like her mamma and loves the beach, the water the sand, listening to the waves...she is definitely  a water baby :)...Of course … [Read more...]

Wonderful Surprise!!!!!


We were contacted today by one amazing person, who has learned about SMA through following the journey of one amazing SMA kid..... Charleston Goeppert. This "person" who wants to remain anonymous, has been following Cash's SMA Journey ..Hope for Charleston... and was so inspired by him that they wanted to do something to honor his upcoming 2nd Birthday!!!!!!!!!!!!! This person will be donating the proceeds for an IPAD for an SMA KID in honor of Cash's second birthday!!!!!!!!! This literally … [Read more...]

Sophia’s Cure IPAD GIVEAWAY!!!

two ipads

We are so excited to be giving away another IPAD!!!!!! This all became possible after we were entered into the Respironics contest....because of the overwhelming support for SCF they have generously donated the proceeds for this giveaway. Ok so enough already ...right!!!! Lets get on with this giveaway!!!! Here are the eligibility requirements: 1) There must not be an IPAD in the HOME 2) For SMA Kids/adults only Soooooo how to enter: 1) Comment on this blog post below please include … [Read more...]

Thank you for VOTING for SOPHIA……


We are so overwhelmed with everyones support in the recent Respironics contest. We received an email today that Sophia's video came in 2nd place!!!! Though the contest stated only 1st place would win the prize, Respironics was absolutely floored by the support for Sophia's Cure , and have generously decided to donate proceeds for an IPAD!!!! We are so excited that we are able to give away another IPAD to an SMA Kid!!! Thank you again for supporting us and for voting for SCF!!!!! Stay tuned for … [Read more...]

Vote For Sophia!!!


We are excited and honored to be in the running for Respironics "Partners in Ventilation" Please click here and Vote for Sophia's Video and share with your friends and family. We appreciate all the support. Voting ends Oct 28 ...Any prize money will be used to purchase IPADS for SMA Kids....Thank you for your continued support!!!! VOTE FOR SOPHIA … [Read more...]

Together we will find a cure……

Screen shot 2011-10-03 at 9.31.44 AM

Over the weekend we received a letter from the McCarthy Family. We met this family briefly when we were all at Avery's Race to Cure SMA...The McCarthy's have a beautiful Son with SMA named Braden...... To Sophia's Cure Foundation Our son Braden was born with type 2 SMA. On August 20th 2011 some friends of ours held a benefit dart tournament with Braden being the inspiration and guest of honor. The idea was spearheaded by a man by the name of Brian Pfeffer and he was joined by John Martyka to … [Read more...]

Thank you BW Unlimited

Paul Mcartney guitar

A few months back we were entered into a contest that BW Unlimited was having on their Facebook page. Because of the hard work of the SMA Community, our friends, family and faithful followers we took first place!!!! Your relentless voting everyday paid off and we cannot thank you all enough!!! Because we won 1st place we were able to choose from BW Unlimited's large selection of autographed items. After a lot of thought and feedback from the community we chose the autograhed Paul Mccartney … [Read more...]

Prepare for the Worst…….Hope for the Best

Sophia penn state

Our family recently experienced a very scary situation up here in the Northeast. About a week ago, Hurricane Irene was headed right for New York, and especially Long Island. As her approach grew closer, she was not changing her course for a direct hit on Long Island. The Island and City were well under way evacuating towns and warning residents that they would be closing bridges and tunnels. We as family have always been very proactive about having all the essentials for any kind of emergency … [Read more...]


lizzy and dr s

This past weekend at the University of Wisconsin-Madison Hospital they had SMA EDUCATION DAY for Parents and caregivers, headed up by the amazing SMA PULMONOLOGIST DR. MARY SCHROTH. Dr. Schroth never ceases to amaze me in her constant efforts to bring SMA clinical care to the next level. While we are all pushing along promising research to treat and or cure SMA, she is keeping our kids healthy and up to date on all the clinical information for SMA!!! Unfortunately we were not able to attend … [Read more...]

Take Some Sunshine Vitamin!

Mary Bodzo

It is hard to imagine with the intense summer heat that fall and winter will soon be here, and along with it all those nasty winter germs.  Although Krista was home-schooled, I always dreaded the start of each new school year because I knew it was only a matter of time before her siblings would be bringing home all sorts of respiratory bugs. In my quest to keep the entire family healthy, I became interested in reading and learning about Vitamin D3. It seems that this vitamin isn’t just a … [Read more...]

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