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Scientific Advisory Board – Jonah's Just Begun

http://jonahsjustbegun.org/scientific-advisory-board

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Wendy Chung, MD PhD. Herbert Irving Assistant Professor of Pediatrics and Medicine Director of Clinical Genetics. 1150 St. Nicholas Avenue, Room 620. New York, NY 10032. Dr Chung directs a clinical molecular diagnostics laboratory and develops novel genetic tests to improve clinical testing including preimplantation genetic diagnosis to help couples have healthy children&...

jonahsjustbegun.org

Crowdrise – Jonah's Just Begun

http://jonahsjustbegun.org/crowdrise

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. If you have a particular hobby you love doing, why not do it for a cause? Perhaps you are into sports or maybe pie-eating contests, whatever it is, you can create a fundraising campaign around it. In the words of Sanjay Goupta, Do what you love and do it for a cause . Here is an example of how you can Give Up Your Birthday for JJB. Start a Fundraiser today. And of course,...

jonahsjustbegun.org

Board Of Directors – Jonah's Just Begun

http://jonahsjustbegun.org/board-of-directors

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Jeremy Weishaar, President and Jill Wood, Treasurer. Jonah was born July 30th, 2008, happy and healthy. Jeremy and I couldn’t take our eyes off of our remarkable son. He was our first child and his birth changed our lives. Jeremy remarked to his father that it felt like his heart had doubled in size, making room to hold all the love he felt for Jonah. For more information...

jonahsjustbegun.org

Primary Investigators – Jonah's Just Begun

http://jonahsjustbegun.org/primary-investigators

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Professor Telethon Institute of Genetics and Medicine (TIGEM) and Baylor College. Senior Research Fellow, University of Manchester. Dr Alessandro Fraldi graduated with a Biological Science degree in 1999 and in 2003 obtained his Ph.D. in human genetics from the University of Naples Federico II , Italy. While pursuing his Ph.D, he lived in France and conduc...In 2004, he b...

jonahsjustbegun.org

Rare Toolkits – Jonah's Just Begun

http://jonahsjustbegun.org/rare-toolkits

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Our friends over at Global Genes have made RARE Toolkits available to educate and assist those with rare disease and families of those with rare disease. We are happy to share this information with you. USING STORYTELLING TO RAISE AWARENESS FOR YOUR RARE DISEASE. EXPLORING TREATMENT OPTIONS FOR RARE DISEASE: PEDIATRIC PALLIATIVE CARE. STARTING A NONPROFIT: THE FIRST STEPS.

jonahsjustbegun.org

Purple Lemonade Stand for Courage – Jonah's Just Begun

http://jonahsjustbegun.org/purple-lemonade-stand-courage

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Purple Lemonade Stand for Courage. Purple Lemonade Stand for Courage. Purple Lemonade Stand for Courage. Purple Lemonade Stand for Courage-Supporting Sanfilippo Syndrome. Purple Lemonade-A Stand for Courage is a fundraiser started by a 6-year-old. Determine a date and location. Hosting in your front yard is always easiest since you will have access to your kitchen for...

jonahsjustbegun.org

The Pipeline – Jonah's Just Begun

http://jonahsjustbegun.org/the-pipeline

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. Released November 26 2013. Stem Cell and Neurotherapies Group, Centre for Genomic Medicine, University of Manchester Willink Biochemical Genetics Unit, Centre for Genomic Medicine, St Mary’s Hospital, Central Manchester University Hospitals NHS Foundation Trust. To read the entire press release click HERE. Visit the Lysogene website for complete details. Shire Enters into...

jonahsjustbegun.org

HANDS Partners – Jonah's Just Begun

http://jonahsjustbegun.org/hands-partners

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. HANDS (Helping Advance Neurodegenerative Disease Science). HANDS is a consortium of patient groups, scientists and clinicians that work together to drive the science for Sanfilippo Type C. Everyone in the consortium plays an important role in creating treatments for ultra-rare diseases. The patient groups fund the science. The scientists conduct the research. ...

jonahsjustbegun.org

Events – Jonah's Just Begun

http://jonahsjustbegun.org/events-2

Jonah’s Just Begun. Jill Wood’s Personal Blog. What is H.A.N.D.S? Levi’s Life, Love & Laughter. Le combat de Haïtem contre Sanfilippo. From day one, Jonah’s Just Begun supporters have hosted fundraising events all over the country, be it garage sales, bunco parties, or run/ walks. Without all of their generous support we would never. Have gotten this far. As important as raising funds. Below you will find a short description of some of those fundraisers and awareness campaigns. World Rare Disease Day.