Jackie Meek is the founder and though she now has a small team of admin support, she continues to help moderate the hugely successful Retinitis Pigmentosa Support group (Family Support Group) on Facebook. It is the most prominent support group for those with RP along with other eye disorders on Facebook today with nearly 10,000 members worldwide. If you’d like to check out the group, click the link: RP Family Support.
F R I D A Y F R I E N D S
J A C K IE M E E K
About Jackie Meek
Warmhearted and empathetic Jackie Meek participates in a number of activities to raise money and awareness for those with sight loss, children’s cancer to benefit a group in Thailand and others who touch her. For example, she has also run The Race for Life. To see photographs and newspaper clippings of her passion in helping others, check out this link. Although Jackie suffered from a brain tumor, she chose to create a support group for those with Retinitis Pigmentosa.
Why Jackie Chose to Start the Group
After meeting someone with Retinitis Pigmentosa, she searched the Internet for a support group for people with RP and could find little help and support for them so she joined Facebook and set up her own support group for them. By 2010, it had grown to nearly 3,000 members. People had joined not only from the UK but also from America, Canada, Australia and countries all around the world.
Each day Jackie encourages her members with positive memes, articles filled with those living successfully with vision loss, and / or RP, specifically. She advocates for guide dog users, posts updates on technological innovations that enable or will one day soon assist those with vision loss. Jackie supports the accomplishments of those in her group, sometimes featuring them on the header. She runs a tight ship and doesn’t tolerate disrespect for different opinions. Whatever she does works because the majority of members both give and receive support.
Messages of Gratitude
Jackie posts that she’s received many messages from people with RP, doctors, ophthalmologists, and eye surgeons around the world thanking her for all she does to help those with RP. Her group not only serves to inform those, it also connects the experts.
“RP is so rare only people with the eye condition can share what it’s really like.”
For example, those with RP lose all their peripheral vision and end up with tunnel vision. Jackie emphasizes how very difficult they find it to live with. then, they have to fight to accept they will have to one day use a cane. The fear of the stigma attached to using a cane becomes too much but having the group enables them to share their fears.
Music Videos to Raise Awareness
Jackie likes to create videos to accompany songs with inspirational lyrics to encourage those with RP and raise awareness of the challenges of living with this rare eye condition to others. In her videos, she add facts and includes members of the support group living their life with RP to put faces to this disease.
This is her latest music video for awareness and can be found on the RP Support site.
Surround Yourself with Positive People
She states on her blog, “My medicine for life is to keep well away from negative people, keep yourself close to positive people, eat well, run hard, appreciate the simple things in life like sitting in a field on your own and looking around you and listening to yourself breathe. We don`t know when we may stop breathing. Live life to the full while you can breathe.”
About Jackie Meek
Jackie is married and lives by the sea in Penbrey, Carmarthenshire, UK. Although she was diagnosed with a brain tumor in 2001, which affected her vision, it is now in remission. Jackie loves to run and walk her dog by the sea. Better known as Mad Jackie, she says, “I’m not a business woman but I make it my business to help people. You only live once but if you do it right, once is enough.”