2017 Research Funding Update

With the help of TEAM BEV, we just funded 4 research projects from the funds raised during 2017.  Collectively as a team, your donations and support are helping scientists dive in to study this disease and look for a cure for generations to come.  THANK YOU!

  • $100,000 – to Scripps Research Institute – Matt Disney – They have a series of compounds that they believe are brain entrant that affect many aspects of HD by targeting the CAG repeat.  They are near a real breakthrough and will use our funds to see if the compound can indeed be a breakthrough to treat HD.
  • $100,000 – to Oregon Health & Science Univ. – Jodi McBride (we funded her in 2015) – They have 3 significant ongoing projects that are using the monkey models that were developed with our funding in 2015.
  • $100,000 – to Massachusetts Institute of Technology – Myriam Heiman – Study of two genes that they believe regulate the toxic accumulation of mutant Huntingtin in the brain.  Our funding would allow them to perform the necessary therapeutic test studies in mice.
  • $50,000 – to Glycoscience Research – Larry Holler – continuing to work to get GM1 to clinical trials (we funded them in 2016)
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Bev’s Story and GlycoScience Research Update

Bev’s story: Listen to Bev’s 6-minute video

The BHHDF donated research funds to GlycoScience and here is an update:

I have been meaning to update you on our progress but we’ve been busy! Your funds have really moved this project forward.  With $100k we were able to get started on the pharmaceutical grade manufacturing with the GEAR (Graduate Education and Research) Center in Sioux Falls.  They were able to match the amount with $100k and have hired a PhD researcher, Dr. Aaron Harmon, who is in charge of the start-up manufacturing process.  We have known him since he was in graduate school and are very fortunate to have a researcher of his caliber on the project. We have biweekly meetings with Dr. Harmon and his team members, including Dr. Foss, Quality Control and Quality Assurance, and other researchers.  Their goal is to have the first lot of GM1 in the bottle later this fall.

 

The other $50k has gone to the GlycoScience Research lab at the Research Park in Brookings. Again we were able to use the funds to obtain another $10k in matching funds from a South Dakota Community Foundation Innovation Grant.  The lab at the Research Park has opened doors and has allowed for networking opportunities that have moved the project forward.  Thus far, with the help of a summer intern, we have been able to extract DNA from sheep blood samples and genotype over 2000 lambs to identify the lambs that are a rich source of GM1. Once tissues from these lambs are processed the GEAR center will extract and purify the GM1 to use when we are able to move into clinical trials.

 

Additionally, we have started working with Dr. Gary Dunbar at Central Michigan University.  Dr. Dunbar has done GM1 research for over 30 years.  He worked with Fidia, the Italian company that started with the cow source of GM1.  He is a strong believer in the potential therapeutic benefits of GM1.  He is also connected with the HD community in Michigan and shares our motivation to help HD patients and their families.

A Day in the Life of Bev! Her Story, Part 8!

Bev and Bob celebrated their 17th wedding anniversary in late October!  They went for dinner at the Alexander Hotel in downtown Indianapolis.  Bev reports that the food was amazing and the bar is spectacular.  The hotel is brand new and is quite the scene and was an excellent place to celebrate this special date!

Planning for the 2015 Bev Hartig Huntington’s Disease Foundation annual event is well underway.  Bev’s team met once in October and once in November to assign roles and team leads and to nail down the theme for April.  After much consideration, we landed on the theme, “Around The World to Cure HD”!  The event will focus on the variety of countries, traditions, and fare from all over the world and the attire will be cocktail dress with a twist from the country of your choice.  We anticipate having food themes from Mexico, China, Italy and various other countries for a variety of décor and food choices.  Start planning your outfit now as you make your travels!

The Hartig family is preparing for the holidays.  They will be staying in town this year and Bev reports that her parents came to Fishers for Thanksgiving and that Bob’s parents will be in town for Christmas.  It is a blessing to have both families visit and celebrate in the Hartig home at this time of year!

The first of Bev’s fundraising events kicks off on Sunday, November 30th from 2-5PM at Dahlia’s Boutique in Fishers, IN.  The store will be open for holiday shopping and a portion of the proceeds will be donated to the BHHDF.  These events are so fun to gather and socialize and also raise awareness and funding for a greater cause!

As 2014 winds down, we reflect on the blessing of time, health and memories made for another year, one day at a time.  May the start of 2015 be a great launch to a wonderful season in your life and may everyday be a gift despite the challenges that life brings.  As our hero Bev lives life to the fullest one day at a time, may you also look at life and approach it with, “I will never say I can’t.  I will always say, ‘I’m going to try!’”

Give thanks.  Be blessed.  We look forward to a marvelous 2015!

Stay tuned every couple of weeks as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com

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