Hi. All. New address for Sainta America: Santa America Santa John Scheuch 4102 W. 94th Terr. #110 Prairie Village, KS 66207
Also, please check out the note below on how you can help the Florida Schol for the Deaf and the Blind.
Please see the flyer Farm to Table. It is An enchanted evening under the stars being held on March 4, 2017 at 6:00 p.m. Just in time to attend after Leadership. All profits go to FARA an organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's Ataxia. www.curefa.org.
WAYS YOU CAN HELP FLORIDA SCHOOL FOR THE DEAF AND THE BLIND AFTER THE HURRICANE HORROR
As we approach the end of our ESA year and our chapters are looking for ideas as to how to disperse our funds here are a few suggestions that could help our State Philanthropic project of the FSDB. As you can see there are a lot of little things that we can do to help. I know that we did the “underwear” collection for them this year and we are looking forward to collecting them all together with the small suitcases at the Leadership meeting, but I think that most of our chapters can also help with these needs.
In talking to my colleagues, the biggest needs right now item wise is in our transportation department. As you know, about 400 of our students live with us during the week and come from all over the state. As far south as the Florida Keys, as far West as Pensacola, and everywhere in between.
The bus ride for many of these kids - twice a week - on Friday and Sunday - can be very long! Therefore, we provide them with things to do on the bus. Here is what they use. They below can be for ages 5 - 22 years old so there is a variety of options.
- Puzzles where pieces don't come out - travel puszles
- Games where pieces don't come out - travel games
- Coloring books - children's and the new adult coloring books that are out
- Colored Pencils
- Playing cards - Uno, Go Fish, etc.
- Anything travel game related
- Snacks - nonperishable - fruit snacks, gold fish, graham crackers, pretzels - need to be individually wrapped and somewhat healthy (no cookies, candy, etc.)
- Gift cards to Dominoes - in $25 increments. A few times a year we purchase pizza for the students on each bus.
- Total of 195 small, light throw blankets (preferably yellow). We need 15 per bus and have 13 yellow buses - which is where we got the 195 number.
- 26 golf umbrellas - 2 per bus with 26 total buses - which is where we got the 26 number
- 13 Zippered bags of plastic crates that can be secured under seat or in overhead bins to hold the games, coloring books, playing cards, blankets, etc. This would be for the 13 yellow school buses.
We will be glad to collect any donations that you have at the Leadership meeting or at State Convention. If you have any questions, please don’t hesitate to contact me.
Here are two projects that your chapter might consider for philanthropic events.
Girl Power 2 Care was introduced to us by Sharon Hayden at Leadership in Ocala. The founder, Ingrid Harding, spoke to us about Rett Syndrome, a neurologic disorder that primarily affects girls. Build a Garden of Hope to support research for Rett Syndrome.
Friedreich's Ataxia (FA) is a debilitating, life-shortening, neuro-muscular disease. Onset can vary from childhood to adulthood. Gavin Lambert, son of Dawn Lambert, Eta Rho, has FA. Please go to kickinfa.com to read more about FA and Gavin's journey. He is an amazing young boy who is an inspiration to all of us. See how you can contribute to the research to end this disease.
Girl Power 2 Cure, Inc. 626 S. 8th St. Amelia Island, FL 32034
Phone: 904.277.2628 Fax: 904.212.0587
Girl Power 2 Cure, Inc. is a 501c3 nonprofit organization dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome, a devastating neurological disorder that almost exclusively affects girls.
We are committed to making Rett Syndrome the first reversible neurological disorder by harnessing the spirit of girls to support fellow girls who are suffering. We support girls in the planning and implementation of events that raise awareness and funds for Rett Syndrome research, as well as support Rett families with resources, fundraising help and awareness tools.
Our inspiration is our flower: always in bloom with hope and positive energy, ready to grow anywhere there is someone ready to join in our mission.
Friedreich's Ataxia Research Alliance (FARA) P.O. Box 1537 Springfield, VA 22151 fara@CureFA.org http://www.curefa.org/ Tel: (703) 426-1576 Fax: (703) 425-0643 Cause
FA is a genetic disorder. FA patients have gene mutations that limit the production of a protein called frataxin. Frataxin is known to be an important protein that functions in the mitochondria (the energy producing factories) of the cell. Frataxin helps to move iron and is involved with the formation of iron-sulfur clusters, which are necessary components in the function of the mitochondria and thus energy production. We also know that specific nerve cells (neurons) degenerate in people with FA, and this is directly manifested in the symptoms of the disease.
There are currently no treatments for FA. Patients are monitored for symptom management. FARA is funding research to find a cure. We believe the treatment era for FA is now! As a result of great advancements to understand the cause of the disease, new treatments are now emerging. These treatments address the causes of FA such as gene mutation, frataxin production, iron sulfur clusters, and mitochondrial function. A full listing of treatment initiatives can be viewed in FARA’s treatment pipeline. Several of these treatments will be in clinical trials which require patient participation.
Florida School for the Deaf and the Blind (FSDB) is collecting Box Tops for Education. (See below) If you are not familiar with this program, the school collects the box tops clipped from certain products and turns them in for cash. This is an exceptionally easy way at no cost to you to support FSDB.