2015 Champions of Hope Nominations Open March 15!


If so, we want hear from you!
2015 Community Nominated Awards for the Tribute to Champions of Hope Gala will be open for submissions starting March 15th! We are looking to YOU to nominate those individuals and organizations who are making a difference in your rare disease community.
The six nomination categories are:
·         RARE Champion in Medical Care & Treatment
·         RARE Champion in Science
·         RARE Champion in Advocacy​
·         RARE Champion in Teen Advocacy​
·         RARE Champion, Collaborations in Advocacy
·         RARE Champion, Collaborations in Science & Technology
For more details on each award, please click here.Nominations close on April 30th.  Awards will be determined by nominees’ merit, not by number of submissions.

The 2015 Tribute to Champions of Hope Gala will take place September 26th at the Hyatt Regency Resort & Spa in Huntington Beach, CA. Winners will also be expected to attend an afternoon ceremony on September 25th.

Please email any questions or comments to Amy Grover at amyg@globalgenes.org


Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.


Day 4 Coverage of ENDO 2015






LB-OR02-Glucose Metabolism: From Bedside to Bench

A meta-analysis of the safety and efficacy of a glucagon-like peptide-1 receptor agonist added to basal insulin therapy versus basal insulin with or without a rapid-acting insulin in Type 2 diabetes
CH Wysham, J Lin, L Kuritzky

Hypoglycemia in patients newly-initiated on basal insulin: Impact on treatment discontinuation
M Dalal, M Kazemi, F Ye

OR36-Metabolism and Gestational Diabetes

Impact of gestational diabetes on long-term vascular function
O Ajala, L Jensen, EA Ryan, CL Chik

OR40-Obesity: Human Studies in Body Weight Regulation

Increased protein intake during overfeeding increases energy expenditure, satiety, and urinary cortisol
A Graham, MC Schlogl, J Krakoff, MS Thearle

OR40-Obesity: Human Studies in Body Weight Regulation–Winner: Outstanding Abstract Award

Acute weight loss stimulates lipolysis and macrophage infiltration in the subcutaneous adipose tissue of obese women
JO Alemán, NM Iyengar, J Walker, J Gonzalez, GL Milne, DD Giri, CA Hudis, JL Breslow, PR Holt, AJ Dannenberg

OR44-Thyroid Cancer

Salvage therapy: When a tyrosine kinase inhibitor (TKI) fails in advanced medullary thyroid cancer (MTC)
SP Weitzman, KT Peicher, R Dadu, MI-N Hu, C Jimenez, C Gardner, A Qayyum, M Hernandez, ME Cabanillas

OR44-Thyroid Cancer – Winner: Outstanding Abstract Award

Phase II clinical trial of sunitinib as adjunctive treatment in patients with advanced differentiated thyroid cancer
A Bikas, P Kundra, JA Wexler, M Mete, S Desale, L Wray, C Barett, B Clark, L Wartofsky, K Burman

OR45-What Is New in Vitamin D?

Bioavailable fractions are better markers than 25 hydroxy vitamin D for monitoring vitamin D status during pregnancy
MR Pandian, J Pandian, Z Seres, AN Elias

High dose vitamin D2 supplementation for a year does not cause serious adverse events including emergency room visits and hospitalizations in African American men with high burden of chronic disease
C Onochie, I Ciubotaru, A Domenico, Y Eisenberg, SC Kukreja, A Kouser, E Barengolts

OR45-What Is New in Vitamin D? – Winner: Outstanding Abstract Award

Incidence of hypercalciuria and hypercalcemia during vitamin D and calcium supplementation in older and younger women: A comparison between Caucasians and African Americans in two randomized trials
SH Tella, JC Gallagher, S Yousefian, V Yalamanchili

Battleground Diagnosis: The War to Survive Cushing’s Disease

Battleground Diagnosis, directed by filmmaker, Marc Harris, is a feature length documentary film that shares the stories of the survivors of a rare illness, Cushings Syndrome/Disease.

Marc Harris is the cousin of Karen Thames, Cushings survivor. He witnessed Karen go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushings, as she tried for many years to get answers from professionals. As she continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; Karen continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching a Cushings episode of Mystery Diagnosis, Karen Found her answer! Ultimately, she sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. Karen had brain surgery in Seattle on November 16th, 2011. After a recurrence of Cushings, Karen had a Bilateral Adrenalectomy (BLA) in Wisconsin on August 21st, 2013.   This leaves Karen with Adrenal Insufficiency for life. However, she continues to fight and thrive!

After having a discussion with Marc in which Karen described that she knew hundreds of others who also had been through long journeys with Cushings, the diagnostic and treatment process; In November, 2012, Marc and Karen decided to document these stories.  Since that decision, Marc has traveled all over the country to interview Cushings patients who are all known to Karen. They all share their stories of struggle, pain, and triumph in the hopes that they can help the world to understand this rare disease.

Marc has also interviewed experts including Endocrinologists with expertise in Cushings, neurosurgeons, BLA surgeons, and mental health experts.

Karen’s continues to thrive everyday as a wife, a mother, and an overcomer! She has made the empowered conscious choice to use her professional background to advocate for the Cushing’s community and to be a voice for all of these brave warriors-Battleground!

We want to shout out loud to the world and spread the word about this documentary, which we hope will affect change and help save lives!

Follow our page and continue to support:http://www.Facebook.com/Hug.A.Cushie

Thank you! Thank you! Thank you!

Subscribe to Karen’s Thunderclap here: https://www.thunderclap.it/projects/23028-hug-a-cushie-battleground

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