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Greed is not good. Greed is greed. The incentive of profits can be a great thing, but it's not everything. The free market has no solutions for Ariana Kallas, a four year old with a rare disease called Morquio (Mor-Key-Oh).
Morquio only affects one out of every 200,000 births, and just 400 Americans have Morquio. A cure for this rare syndrome wouldn't get the sales volume a pharmaceutical company needs to recoup research costs.
That leaves the job up to us; government, society, community, and family. It's been up to Ariana's parents, George and Bertha for the last three years. They've raised over $155,000 through poker tournaments, spin exercise benefits, tea fundraisers, carnival booths, a rally on Ariana's birthday, a magic show, music benefit shows, Greek night and a car show.
George Kallas was so proud Saturday night when he spoke about the money he delivered to Dr. Tomatsu for research. George said with a smile that it was three times the amount the doctor was receiving in grants. I have to report that there was hope in the air at the reggae benefit show I attended last Saturday. George and Bertha were strengthened by those they had met and hopeful for a cure for Ariana. In Bertha's own words
Ariana, our little songbird as we like to call her, has been such a blessing to us. I believe with all my heart that God has a purpose for her. Maybe it's to teach others about children with similar disabilities and to help open up their minds and hearts. Maybe it was to teach her mommy and daddy the meaning of strength. I can truly say she has brought out an inner strength in us that we never realized existed. When I begin to doubt and second guess myself, I always think of her. She never had a choice in life and has had to be strong since day one. She's our little angel and I thank God every day for giving her to us. Our lives will never be the same, but she has changed it for the better. This was just meant to be...she was meant to be. Our little gift from heaven.
They brought the youngster up to the microphone because she requested to be able to thank all that attended. It was a humbling yet inspirational moment.
This 2007 video shows the Kallas family at the beginning of their endeavor.
What can you do to help?
1. An e-mail to Dr. Shunji Tomatsu at Tomatsus@slu.edu and his assistant Dr. Adriana Montano at montana@slu.edu. Just a quick thank you and some encouragement could go a long way.
2. Technical help? See these studies 12(h/t to SingleVoter) Here's a link to Morquio in the medical encyclopedia.
3. Funding? Even $3 sends a message that we too have hope for a cure.
Electronic-funding
Donations can be mailed to
Annunciation Cathedral
c/o Ariana's Cure
245 Valencia Street
San Francisco, CA 94103
Non Profit ID #942702215
The first 10 that donate and e-mail me their address will receive a purple Ariana's cure wristband. Her parents are also selling jewelery and shirts and can be reached through the website Ariana's Cure.
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