What’s Your Story?

We’ve been thrilled with the reaction to our website, and we really enjoy sharing with our many fans on Facebook.   We get to share with you tips for healthy living, breaking news about medical research, and stories of hope and courage.

It is the stories of the people that we’ve helped that have inspired us the most.

We shared the story of Justin, and how his mother has struggled to raise him.  Kindra is like many other moms, married and raising children, but her story has a twist:  In addition to school, groceries, and family, she seeks answers for dealing with Justin’s pachygyria and infantile spasms.  Her story touched us, and led us to the story of Marissa and her father’s chronicle of her life.

We got to tell you about Meghan.  She was 2 when her father was diagnosed with Huntington’s disease.  As she started college and began to plan her own adult life, she also received a diagnosis of the disease.  Her father’s illness gave her a 50/50 chance of having it herself, and the coin flipped against her.  Meghan didn’t give up, though.  She graduated college and is sharing her story on YouTube and is hosting a concert to spread awareness of her disease.

Roberta has a story like many of the people that we talk to.  She went through months of illness, testing, misdiagnosis, and was finally told that she had Pulmonary Fibrosis.  After reaching several roadblocks in her journey to treatment, she made a right turn and found us on her road.  She still has many hills to cross, but breathes easier knowing that she has an advocate in Caring Voice Coalition.

Matthew went from an active lifestyle to one of uncertainty after a diagnosis of Alpha 1.  Many people commented on his story.  They shared with us their own tales of fear and uncertainty, and of the struggles that they had endured in a quest for treatment.  Matthew’s stories put us back in touch with Steven, whose mother died of Alpha 1.  We became involved with Steven after his own diagnosis, and it was wonderful to help him, to know that he was hanging in there, and we were honored to make a small dent in his life.

Sometimes it’s hard to convey the message in some of our stories.  How does one express a lifetime of chaos, doubt, and failure?  Joyce experienced all of these things in her journey through Narcolepsy.  The comments to our telling of Joyce’s story conveyed the message:  You’re not alone, you’re not crazy, and your perseverance is an inspiration.

We often receive notes and messages from the people that we help that thank us for what we do.  We’re referred to as “angels”, “lifesavers”, and “heroes”.  That is all very flattering but we sometimes come across someone who puts everything into perspective for us.  Such is the case with Dennis.

Dennis is a bona-fide New York City Detective with over 20 years of experience on the beat.  He went from a street cop to an undercover officer, and then received his Detective’s shield.  He was in Manhattan on September 11, 2001 and spent several grueling months at Ground Zero as he and his comrades combed the wreckage for remains.  He was then diagnosed with Pulmonary Hypertension.

Dennis’s story brought comments, encouragement (and some flirting!), from friends, PH sufferers, and cops with PH.  People heard his story of courage from just across town in Long Island, from all over America, and from as far away as Scotland.

We wonder how many others there are out there like Dennis, Joyce, Matthew, Roberta, Meghan, and Justin?  We’re sure that there are millions of you.  And we plan on continuing to provide a voice for you.  If you’re someone who is currently working with us, or someone who stumbled across our site, we’d love to hear from you.  Contact us and let us share your story.

We empower patients who live with life threatening chronic diseases.  The people in the stories that we’ve shared are the heroes.