A Day in the Life of Bev, Her Story, Part 14!

As written for the 9th annual BHHDF event invitation for April 29, 2018:

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Greetings Friends and Family:

Each year we sit down with Bev to get an update to share with you on her year and progress as she battles HD.  This disease is progressive and we thank you for being part of her story!

Huntington’s Disease has been in Bev’s family for the past 19 years, when she learned of her biological father’s then battle with the disease.  Soon after, in 1999, Bev was tested and learned of her positive results with HD.

Currently, the disease is progressing in Bev’s life.  She can no longer drive and needs assistance from drivers and caretakers through many parts of the day.  She is still very independent for self-care tasks, but it takes her a very long time to get ready and to start her day.

Some changes in the disease from the last 12 months include more challenges with word pronunciation and articulation.  At times it can be hard to understand what Bev is saying, as it relates to an increased loss of control and communication between the nerves and muscles all over the body, including the tongue.

This also has an impact on Bev’s ability to chew and swallow foods.  She needs her food cut or blended into very small pieces, so some of her daily regulars and easy-to-chew items include smoothies, cereal and pie.  She reports that she eats pie every day….pumpkin or apple are her favorites!

To see Bev, her movements, called “chorea”, are continually progressing. She cannot stand or sit still and her arms may uncontrollably move quickly across or above her body.  This has an impact on her balance and gait and her risk of falling is an ongoing concern.  

Due to all the moving and imbalance, it’s not uncommon for people to approach her and ask if she is intoxicated, as was the case at a recent school choir concert.  Bev’s hope is that people will have more compassion, less judgment, and an open mind to others who may be battling slow, silent diseases like hers.

Bev reports that HD is most trying emotionally as well.   As she wakes up daily, her very first thought is the reminder that HD is eternally present.  It’s not going anywhere and this is going to be a hard day. And the days will get harder as time passes.  

Bev’s main priority is to be up early with her children as they start their day. She wants to be present and in every part of their lives while she still can.  However, her biggest challenges beyond the physical aspects are having to step back from her roles as a mother and allow other people to step in to assist the family.  

On the other hand, she will say that her greatest blessing to this point to assist her with dealing with HD is her ability to openly talk about her challenges and limitations. She no longer wanted to put HD “on a shelf” and worry about it someday.  She decided to confront all aspects of it head on and living this out loud is helping her as she progresses along this journey.

Bev’s ultimate hope is that she will be part of science and research finding a cure for HD in her lifetime.  Now in our ninth year of the “Bev Hartig Huntington’s Disease Foundation”, we have successfully raised over $1.4 million and funded eight research programs.  

 

With your support, we will continue to educate, fund and believe.  Thanks to you, Team Bev, for your ongoing support and generosity!

In great hope to cure HD,   

The Hartig Family

 

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Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:

 

Facebook: fb.com/TheBevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

 

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Writers: Mindy Irish and Pam Barr

 

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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)

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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