Heather Fulton Curtis Foundation

12/02/2025

Today is Giving Tuesday. There is still time to make a donation that will be matched and will make your donation worth even more. Thank you!

Send a message to learn more

11/30/2025

Dear TAK Warriors, Friends and Family,
Please help us continue to work on our goals and mission to educated and support TAK patients and to work with medical professionals to improve diagnoses and treatments. Heather Fulton Curtis Foundation is a 501(c)(3) non-profit that relies solely on donations. If you can make a donation, thank you very much. You can also help by creating your own fundraiser for us. Or even by sharing this fundraiser with your friends and loved ones.

Thank you!

Send a message to learn more

11/29/2025

Please help us continue to educate and support TAK Warriors around the world. If you can donate, thank you, and please share this post with friends and family.

Send a message to learn more

11/28/2025

Tuesday, December 2, 2025, is the annual Amazon Giving Tuesday. Amazon will match all donations made on or before that day. For me, asking for money is one of the hardest parts of managing a charitable non-profit. But it is the only way we are able to keep doing what we are doing. In March, 2017, we lost our daughter, Heather, due to complications related to a rare disease known as Takayasu's arteritis (TAK). To honor her memory and to help others who suffer from TAK, I created this 501(c3) non-profit. It is funded solely by donations and fundraisers like Giving Tuesday. I won't go into detail here about the disease and the way people are affected by it but I invite you to go to our page for more detailed information about Heather's TAK journey.
TAK is a very complicated condition that can affect any or all parts of the body. People with TAK are very vulnerable to strokes. On December 10, 2017, Heather suffered a massive right brain stroke which left her with permanent mobility issues to the left side of her body. Stroke can affect each person differently not only in terms of mobility and use of hands and arms but also with brain trauma both temporary and permanent. Along with some issues to her left side limbs, she also suffered some affects to her cognitive functions which, gratefully, with the help of therapy, were temporary. As one of her caregivers, I witnessed firsthand the struggles she went through to improve and regain her cognitive health. It was a difficult and often frustrating process. Working with therapists and other professionals, my husband and I have created a puzzle / game that can be used as a tool for therapists to use as an aid to cognitive rehabilitation. About a month ago, we introduced this game to medical professionals at the Minnesota Statewide Stroke Association Conference. Even though we had been working all along with therapy professionals and had gotten nothing but support and encouragement, it was still nerve wracking to share it for the first time publicly. The response was overwhelmingly positive! Conference attendees came from all over Minnesota and South Dakota and we had multiple requests about how they could have one of the games for use with their therapy patients.
We presently have a very limited number of games to distribute and they have all been spoken for. Beginning the first of the year, January, 2026, Steve and I will be traveling to South Dakota and several points in northern Minnesota as well as locations in the Minneapolis metropolitan area to deliver the games. Our goal is to DONATE games to any and all rehabilitation centers to aid cognitive rehabilitation therapy. And we have been invited to display the game at other conferences in 2026, one in Fargo, ND, as well as one in the local metro area. In light of the response we have received so far, we are in the process of upscaling production so we can have games to DONATE to rehab centers for multiple types of brain disorders.
We started with limited funds that have gotten us this far but in order to continue with our work, we will need financial help. If you can help by donating to this fundraiser, please do. No amount is too small. If you have questions and would like more information and details, please send us a message to [email protected].
Thank you,
Heather's mom and dad (Steve and Anna Fulton)

Send a message to learn more

11/22/2025

FREE FREE FREE FREE FREE

Holiday stress is a very real thing and can be especially difficult for people who are dealing with TAK and the life changes needed to maintain good health. If you are having a hard time explaining to family, friends and work colleagues why you cannot always meet their expectations, our Patient Guide brochure can help you. The Guide explains how TAK affects you and your body and why you must make choices that are necessary in order to maintain good health. The brochure is FREE!!!! So far, nearly 1,000 copies have been distributed across the globe to 32 countries and across the United States to 28 states. Whether you need one or more, there is NO CHARGE for the brochure or the cost of mailing.

To request the FREE Patient Guide please click on MESSAGE at the top of this page to leave your POSTAL MAILING address (not your email address or text address). Be sure to leave your name and full address exactly as it should appear on the envelope. Address formats can vary from country to country so please write your address in the proper form in order to ensure prompt and accurate delivery.

Happy Holidays wherever you are and be well,
Heather's mom (Anna Fulton)

11/22/2025

EXCITING NEW TREATMENT NEWS FOR TAK WARRIORS.

https://vasculitisfoundation.org/resources/video-library/?fbclid=IwY2xjawOPIspleHRuA2FlbQIxMABicmlkETFzNGVlcDZPUHVwU3FxVDlUc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHoa3taMv8Z1ukS1qiLRCaYbtAtM0kDWzEXbttyy8B0mXS-CmlwmDm7HkImjl_aem__WJ-er9PjEBIwvs-NZeLlw

This link will take you to a Webinar on the Vasculitis Foundation website hosted by Dr. Kenneth Warrington, from the Mayo Clinic in Rochester, MN. Dr. Warrington is recognized around the world as an expert in Takayasu's arteritis and other forms of vasculities.
He is presenting news about a new treatment for TAK called JAKi. This webinar will inform you about JAKi and how it works. Not only is it helpful for TAK warriors to learn about it but also it is valuable information to share with your doctor(s).

When you get to the Vasculitis page, click on Resources and scroll down to Video Library. The Webinar is the first one on the top row.

Visit the VF YouTube Channel to search our video collection. There you will find videos covering a wide variety of topics.

11/05/2025

At the Regional Vasculitis Conference we attended this past April, we attended a presentation by Dr. Kenneth Warrington who is with the Mayo Clinic in Rochester, MN. His presentation was about a new treatment for Takayasu's arteritis (as well as Giant cell vasculitis) that has recently been approved by the Federal Drug Association (FDA). This is exciting news for all TAK warriors. On Monday, November 10, Dr. Warrington is conducting a Webinar through the Vasculitis Foundation about this breakthrough. The link below will take you to a site where you can register for the Webinar. Many TAK warriors have learned through bitter experience that medical professionals too often are not up to date on the diagnosis and treatment of TAK. It is important for TAK warriors to advocate for themselves and staying informed is critical.

Discover events from Vasculitis Foundation

11/05/2025

We are well into the start of the cold and flu season as well as COVID. There has been a lot of controversy recently about vaccines. Please, please, please talk to a trusted medical professional to help you decide if you should be vaccinated and which ones you need. People with TAK or any autoimmune disease are especially vulnerable to contagious diseases. Advice from a trained professional can help you decide what is the best choice for you!

Be smart! Choose well! Be safe!

11/05/2025

Greetings, TAK Warriors!
This past April HFC Foundation made its first public appearance at a Regional Vasculitis Conference. It was a great new experience. We got to make new friends, reunite with old friends and listen to some great speakers. One of our favorite people, Dr. Kenneth Warrington from Mayo Clinic, Rochester, MN, gave a presentation about an exciting new treatment that could be good news for TAK patients. Stay tuned for as post with more information about that.

The first picture is a of our table at the conference complete with TAK patient brochures (still available) and the other pictures are of a world map that shows all of the places where we have distributed more than 750 copies of the TAK Patient Guide brochure. The black dots represent how many brochure requests we have received from countries all around the world. It is a good news/bad news snapshot of how many people have requested the brochure. It is gratifying that we have been able to reach out to so many people but each of those black dots represent a person who either has TAK or knows someone who does. The HFC Foundation's mission is to work to keep having to add any more of those dots.

04/19/2025

Happy Easter, TAK Warriors,

This time of year brings a season of change for most people in this world. Spring/summer for some, fall/winter for others. What doesn't change is Heather Fulton Curtis Foundation is always working to find ways to encourage and support people with Takaasu's arteritis.

For a while now we have been offering the FREE Patient Guide brochure about TAK that helps understand what it is, how it affects lives and has been a welcome resource for TAK patients to explain how they have been affected by this disease. We have gotten very encouraging feedback on how this brochure has been helpful with educating family members, employers and co-workers and even medical professionals. So far, we have distributed nearly 1,000 brochures to 29 countries (not including the United States) and 30 states in the U.S. We will mail you as many brochures as you would like FREE including the cost for mailing. To make a request, click on "Message" and leave a private message with your mailing address. Please make sure your mailing address is complete, spelled properly and formatted just as it should be on the envelope.

Be well.
Heather's mom (Anna Fulton)

03/31/2025

In light of the recent changes at the federal government level here in the United States, I was concerned that funding for research may have been affected particularly a project being conducted re: TAK by Dr. Peter Grayson at National Institute of Health. I reached out to Dr. Grayson for an update and I was very relieved to learn his research is ongoing and neither he nor any of his team have been affected by recent events.

If anyone reading this post has participated in Dr. Grayson's research, please share your experience in the comments to this post.

Thank you,
Heather's mom (Anna Fulton)

03/11/2025

To the readers and followers of this page:

It has been way too long since I posted on this page and please forgive me for my absence. It is often not easy for me to come here without stirring up a lot of emotional memories. I confess my Foundation work has not been as active as I would like for it to have been but please believe me when I say my dedication to the mission of Heather Fulton Curtis Foundation is as strong as it ever was. I will try to do a better job of serving all of you who share and believe in the work that needs to be done.

I am sharing with you a post I put on my personal page today. Although the Foundation is dedicated to raising awareness about Takayasu's arteritis, most of you know that TAK patients have a higher risk for stroke. Heather had a massive stroke in December 2011 and it is for that reason that we consider our work for that aspect of TAK to be very important. Please be assured our work for TAK awareness, education and research is still our primary goal.

Dear Friends and Loved Ones,
Thank you to all who have sent messages of love and support on this day, the 8th year marking the loss of our daughter, Heather Curtis. It is greatly appreciated and gratifying to know she is remembered by so many.

I had resolved that I was going to maintain my composure this day even while I remembered the many many things I love and miss about her and try to focus on those things instead of on the events of those heartbreaking days eight years ago. I confess last night as I was falling asleep I had a moment where the sadness was overwhelming and I fell asleep with tears falling onto my pillow. This morning I had renewed resolve only to once again lose it when my husband put his arms around me to pull me close and without him saying the words I knew he was thinking the same as I and wanting to comfort me even though he has his own pain to bear. Yet again, we pulled ourselves together and got up to go through our morning routine of playing Wordle and Connections together. Midway through our routine, my cell phone rang, an unfamiliar number showed on my screen and I debated whether or not I should answer. Usually I do not answer calls from an unfamiliar, unidentified number but this time I did and all my resolve, all my composure was undone. If you are still reading this post, please accept my apologies for what I know will be a lengthy one, but that phone conversation may not qualify as a miracle but it may have opened doors that have been stuck closed for a while.

Within hours of Heather's passing, I knew I wanted to start a nonprofit in her memory to advocate for other people who suffer from the disease that took her life. That was the beginning of Heather Fulton Curtis Foundation. Over the years we have had small accomplishments including the publication of a pamphlet that helps to educate patients, their families and friends about TAK. We provide this pamplet free of charge and so far have distributed nearly a thousand copies all over the world to 30 countries not including the United States. But our most ambitious project is still in development and the phone call this morning may be just what we need to move the project along in a big way.

TAK patients are very vulnerable to stroke and in December, 2011, Heather suffered a massive stroke that left her with permanent loss of full function to her left side. With great determination and the help of incredible therapists she as able to have a remarkable recovery. In the beginning, she required around the care and I was able to take early retirement to care for her so Larry could continue to work. That meant I was with her for most of her many appointments including her therapy sessions and I was able to observe many of the techniques used to help her brain heal and recover.

One of the things I did early in the process to create the Foundation was to reach out to a marketing firm to help me set up a page and to create a logo for the Foundation. As time has passed, I saw a way to use that logo to create a puzzle/game that could be useful in helping people in recovery from stroke as well as traumatic brain injury (TBI). I shared my idea with a number of therapists and was gratified to learn that they saw merit with my idea and encouraged me to continue developing it. The goal is to create and distribute it to rehabilitation clinics at no cost. We have made really good progress up to a point but we have found ourselves in a place where we need real professional advice to move onto the next phase.

In May of 2018, many of Heather's friends and loved ones participated in Strides for Stroke to raise money for the MN Stroke Association. It is a group that provides support for stroke survivors and is a wonderful organization. As I was searching for ideas of how we could get past the stalemate we seemed to be in the development of our recovery puzzle, it occurred to me that maybe I could find help by reaching out toMNSA. I called, got a recording, called again, got a recording and today, of all days, I got a return phone call! I have learned to temper my expectations in these situations so just getting return call was gratifying. Best of all, the person who called me is a NEUROSCIENTIST. I put that in all caps because he is someone who is highly educated in the workings of the brain, he works with MNSA, and HE IS VERY INTERESTED IN WORKING WITH US ON THIS PROJECT which means he sees value in it! During our conversation, I completely lost my cool, I felt like I was babbling like an idiot and my entire body was trembling with emotion. Thankfully, he was a very understanding person and we have a meeting with him scheduled for later this month.

For us, this exciting news but that is not the real reason I wanted to share this experience with all of you. Finding someone to validate what we are trying to do is exciting. But we have been running in neutral for so long I was starting to lose hope in the dream and question whether it was worth it. And then, quite out of the blue, on this day of all days, to have our faith restored...I can not find the words to explain what that means to us. At the risk of sounding corny, there are times when I can feel Heather's presence in our lives in very real ways. I'd give anything to hear her voice, her laugh. There are so many times we will remember some of the crazy funny things she used to say and we find ourselves crying from our laughter and the pain of missing her so much all at the same time. Her crazy hair; her witty one-liners, her love for her nephews and how much she would love her niece and great-nephews and niece who know her only through pictures and the stories we tell about her, and most of all, the love she had for her husband, Larry Curtis.

Heather Fulton Curtis, we miss you so much.
Love,
Mom (and dad)