October 29, 2018
Dear Family and Friends,
It has been 12 years since we started our journey with Sturge-Weber Syndrome (SWS). Since then, with your help, we have raised over $228,000.00, which includes monies raised from our annual golf tournament. It is an incredible amount of money, yet in the scheme of things sometimes seems so small. Every year we present a check to Dr. Comi, Lola’s doctor at Kennedy Krieger Institute in Baltimore, Maryland, and we tell her we wish it were more. If I could capture the gratitude that Dr. Comi shares with us, I am sure it would touch all of you. She is always beyond grateful! Our cumulative donations have helped with the following: grants, research, and finding the cause of SWS.
It is exciting to see the donations from so many of you. Not only is it appreciated, it IS making a difference! Every single penny goes to Dr. Comi’s efforts in finding better treatments and ultimately finding a cure. There is no percentage taken off the top for administration fees, literally every single penny goes to Dr. Comi and her team of research experts.
As our annual charity golf tournament approaches, Lola gets excited to see how many people come to this event. It makes her feel very special to know that so many support and love her. She understands compassion so it touches her heart deeply.
Lola is in 7th grade and enjoys school. Her service dog, Bella, goes with her and likes changing classes. She is taking guitar lessons and dance classes. She also likes to write her own songs.
After her recent EEG and neurological visit, it was determined that there was significant electrical activity happening in her brain. Sturge-Weber Syndrome has affected over ninety percent (90%) of the right side of Lola’s brain.
We try not to think about the possibilities of calcification and thickening/hardening of her capillaries, stroke, etc. We know we are lucky…so many of our SWS friends have children that cannot walk, talk or even eat. We have experienced loss and grieved, as they are part of our SWS community. Therefore, we live each day with gratitude…and really appreciate each moment.
After sending this letter out year after year, I have learned this…
- We all know someone who is in need
- We all know someone who is suffering
- We all have our own causes, charities, etc., and our commitment to them is admirable
- We all want to help someone
- We all have been grateful for something
- We all want to give if we can
So I hope you can donate but if you cannot I understand. You will still get my letter, year after year, with updates and pleas for your help.
With love and gratitude,
Jeanette and Mitch Ribak
(aka GiGi and Pops)