Hi everyone. My name is Bayley Paharik. I am the Executive Director and Founder of Hope Alive Ministry (HAM) I graduated in May 2015 with a Bachelor’s of Arts Degree in Communications.
I am very passionate about raising awareness of rare, life-threatening, and chronic diseases.
These diseases take so much away from these children and sometimes even their smile. All of these horrible diseases need a cure.
From following so many children on Facebook with various diseases, I began to learn about these rare diseases and wanted to help raise awareness and help these families.
I started making slideshows for children with all forms of childhood cancer along with the facts in September 2012.
Every year, I decided to make one slideshow on a specific disease and include children with the disease and those who passed away.
September is Childhood Cancer Awareness Month and Leukodystrophy Awareness Month.
September 2014, I made a slideshow for children who have cancer and who passed away from cancer once again.
Click here to see it.
I also made a slideshow about children with cancer and who passed away from cancer in September 2015 in honor of Childhood Cancer Awareness Month.
Click here to see it.
As of February 2016, I have made a slideshow featuring children battling Leukodystrophies and who passed away from Leukodystrophies. Click here to see it. I also made a Rare Disease Day Slideshow for Rare Disease Day featuring children battling rare diseases and those who passed away from them along with facts about rare diseases. Click here to see it.
In April 2016, together with my team, we released a survey for people to fill out giving suggestions as well as how active they are on our social media sites. We also created a closed Facebook group for people who are committed to our cause called “Hope Alive Ministry Champions” where people can find out insider information, ways to help, and offer suggestions. Both of these avenues are designed to improve our internal and external communications and to reach a wider audience.
I find tremendous hope through these children and families. They inspire me everyday to continue to support these amazing families. My passion for these families grew after I met three of them as of February 2018: Anniston Bazar, her parents, Reesa and Corey, big brothers, Levi & Liam, and her great aunt on February 26, 2016 in Pittsburgh (Anniston has Krabbe Disease.); Victoria “Tori” Brackbill and her parents, Lesa and Brennan on February 26, 2016 in Pittsburgh (Tori had Krabbe Disease and passed away on March 27, 2016.), and Grayson, his mom, Piper and grandma on February 10, 2017 in Pittsburgh (Grayson has Krabbe Disease, but was able to get a stem cell transplant in June 2016.).
My goals for Hope Alive Ministry (HAM) are:
1. To support families facing life-threatening and chronic illnesses including those who have had a child/children, grandchild/grandchild, niece/nephew, etc. pass away from one.
2. To become a non-profit organization.
3. To encourage young people like myself to make a difference.
4. To support siblings who have a sibling with a life-threatening or chronic illness or who passed away from one.
5. To reach out to grieving families who might need a boast of hope such as sending care packages.
6. To support families who have someone with a life-threatening illness & chronic illness by posting information about their loved one’s disease on this blog and on Facebook.
7. To raise awareness of life-threatening & chronic illnesses.
8. To advocate for laws that support children battling life-threatening and chronic illnesses through sharing petitions on our social media accounts.
9. To continue to host events online and in person as a way to bring hope to people in a variety of settings like awareness events, fundraising events and more.
10. To be a friend to anyone who needs it. I want to listen to, pray for, and support everyone who simply needs a friend.
Thank you for all of your support!
“Be joyful in hope, patient in affliction and faithful in prayer.” ~ Romans 12:12