“We believe and support the efforts of FARA and their commitment to helping those in need.  I would also like to thank all of our St. Pete guests who came to support the event,” stated Eric Neuwirth, Managing Partner of Bonefish Grill in St. Petersburg.

Ronald J. Bartek, President/ Director/ Co-Founder of FARA was also in attendance.

About FARA:

The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia. 

About Bonefish Grill:

Simply put, Bonefish Grill offers one of the nation’s favorite upscale casual dining experiences.  With attentive personal service and an atmosphere that combines casual attitude and value-conscious prices with a big city bar, guests find themselves amidst a warm and inviting environment.

As the “Fresh Fish Experts,” Bonefish Grill specializes in market fresh fish cooked to perfection over a wood-burning grill.  An unrivaled commitment to quality finds Bonefish Grill culinary leaders searching for traditional and unique varieties of fish such as Icelandic Arctic Charr, Florida Grouper and Wild Alaskan Sockeye Salmon at the peak of their seasons.  A tantalizing array of sauces and original toppings are made daily using the freshest ingredients. These sauces and toppings range from delicate and light to rich and indulgent and provide a variety of choices.  Enticing dishes such as Scampi-topped Filet Mignon, Pork Tenderloin Piccata and Diablo Shrimp Spinach Fettuccine are also among guest’s favorites.

Lively community tables teem with shared plates of inspired appetizers, bar-fresh martinis and signature cocktails. An evolving wine list that regularly features 40 wines by the glass is also offered. Featuring sleek, hardwood floors, commissioned art, eclectic music and knowledgeable service, the dining room is an oasis within which to enjoy a sensational meal. For more information and sample menus, visit http://www.bonefishgrill.com.

Bonefish Grill supports the ocean conservation foundation Ocean Trust, along with other organizations that promote healthy oceans and fisheries around the globe.
Source: OSI Restaurant Partners, LLC
 
CONTACT: Beth Rohrer Hammer, Bonefish Grill, +1-813-282-1225,
bethhammer@...
 
Sources:
 

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

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