How do we tell our story? How do we explain to the world what the life of Hunter Syndrome, MPS, or rare disease is like?
Will they ever fully understand?
The best we can do is tell the raw and honest stories of our families. And that is being done.
Please do your very best, over the next 8 days, to donate, share on Facebook, tweet on Twitter, blog about, e-mail, and by whatever other means communicate to others about the importance of supporting this project. You can easily donate and share by using the short link bit.ly/BWBH.
Boys with Bigger Hearts, a documentary by Joey Howell, a young man with Hunter Syndrome in his family. It tells the stories of four boys/men with Hunter Syndrome and the challenges, joys, and heartache they and their families have experienced.
I’m proud to know many of those involved and am especially proud that my friends Jamie and Deb have allowed this film to show the depths of their struggles and the heights of their joys.
We are still approximately $9,000 away from reaching the goal of the Kickstarter or otherwise all funds are forfeit. We do not want this project to lose this opportunity! Please give and help this project come to life! If you check it out, you’ll realize that in most cases, you actually get something for your gift, like a copy of the final DVD, videos from the families involved, etc. DONATE NOW!