We are excited to announce that the 2015 Community Nominated Awards for the Tribute to Champions of Hope Gala are now open!

We are looking to YOU to nominate those individuals and organizations who are making a difference in the 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 at amyg@globalgenes.org

3 thoughts on “2015 Tribute to Champions of Hope Nominations Now Open!”

  1. Suzanne Flynn says:

    I would like to nominate Elisa Seeger. She was the driving force behind getting ALD on the NBS in New York. Because of her efforts, my two sons have a real chance for a normal, healthy life. She continues to work tirelessly to put ALD on the national NBS. Please, look into the amazing work she is doing for boys with ALD. She is going to change the outcome of this horrible disease for these boys and their families. We are one of those families. Please contact me if you need further information.

  2. Becky Ejupi says:

    My nomination is for Kerry Hughes, an advocate for children with rare diseases, who not only raises money to help find cures, but also implements programs to make the inflicted children feel loved and accepted and happy through the power of music. One of her programs, “Play This Forward”, delivers a personalized iPod for each recipient to cherish. On top of it all, Kerry spends countless hours each week working for a cause without earning anything for herself or even having a family member who will benefit from her work. Her altruistic dedication is really something special and very much deserving of this award.

  3. Conni Calia says:

    I would like to also nominate Elisa Debellis Seeger for her extraordinary advocacy and research with ALD. Elisa has worked tirelessly to research and create awareness for ALD after her own son suffered and died because of This rare genetic disease. She has proven that ALD is not as rare as once believed and due to her perseverance and determination she has enlightened many politicians which has lead to the implementation of Aidan’s Law in NYS. Now ALD has been added to the newborn screening panel in NY and several other states. Most importantly, she is not done yet. She continues to advocate from state to state in the hopes that all states will oblige. Her hard work and dedication has saved so many lives already and she has just begun to move mountains.

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