This includes both those patients who have done well, and those who have not and may have died after surgery. We are looking for clues that might help us learn to predict who will have problems with surgery. To do this, we need the following records:
1. Medical records from your doctor’s office prior to and after surgery, including cardiology workup reports (EKG and echocardiogram).
2. Medical records from the hospital during surgery, including the intra-operative records, and post-operative records. This includes records of cardiology workups (EKG and echocardiogram) and anesthesia during surgery.

If you agree to participate in this study, you will need to sign an ‘authorization to release medical records’ for both your doctor(s) and the hospital. This has to be done by you and given to the doctor’s office, or the hospital. After this, they will copy and ship the records to us at the address below. We also need you to sign and return the ‘informed consent’ to us. Any and all costs associated with these records should also be sent to us at the same address and we will pay for these (no cost to you).

Ship to: Dr. R. Mark Payne, MD
c/o: Cari L. Petty
1044 West Walnut, R4302B
Department of Pediatrics (Cardiology)
Indiana University School of Medicine
Indianapolis, IN 46202 USA
Phone: 317-278-6239
e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

All personal identification in these records will remain confidential and will not be released in any fashion. The information within the records will be analyzed for clues about the health of the heart and the conclusions will be published. We cannot provide specific feedback or information to you about you or your child’s surgery.
We hope you will agree to participate in this study. However, if you do not, we understand and this will not affect your access to medical care in any way. If you have questions about this study, please do not hesitate to contact us at the address or numbers above.
Sincerely,

R. Mark Payne, MD, FAAP, FACC
Professor of Pediatrics (Cardiology)

 

 

 

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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