Help Save Margaret’s Myelin!
Margaret Dunlap, our daughter, sister, wife, and friend has been living with relapsing-remitting multiple sclerosis (RRMS) for 13 years now. Margaret is in need of medical intervention to halt the progression of this terrible disease and a stem cell transplant holds the most promise.
Margaret is the wife of David and the mother of four wonderful children, Cedrik (age 14), Jonas (age 8), Iszyk (age 6), and Zoe (age 1). Many of her years since diagnosis have been manageable and you would have no idea she has MS just by looking at her or talking with her. Though there was progression of her MS, her relapses never severely affected her ability to work and take care of her family. In August of 2013, this all changed.
Multiple Sclerosis (MS) is a progressive autoimmune disease in which a person’s immune system attacks the myelin sheath, the protective coating that surrounds a person’s nerves. The brain cannot effectively convey “commands” to other parts of the body, resulting in an array of difficulties. It is extremely unpredictable, as there is no way to know which part of the nervous system could be affected next. In the case of RRMS, after a “relapse” occurs the person eventually goes back into “remission” for an unknown period of time during which they may feel better, but many times do not regain everything that was compromised during the relapse. In August 2013, Margaret suffered a major relapse (a brain lesion interfering with the communication between her eyes and her brain) that left her unable to work, drive, use computers or smart phones. Subsequent relapses caused double vision, hypersensitivities to sounds, and difficulties controlling the right side of her body. Her MRIs have shown a significant amount of progression of her MS. While she has had some recovery from these relapses, she has had to make adjustments and accept her “new normal.”
After much research, Margaret learned about a research study spearheaded by Dr. Richard Burt from Northwestern University in Chicago. It is a nonmyeloablative hematopoietic stem cell transplant (HSCT) where a patient’s immune system is first tamped down using low-dose chemotherapy followed by an infusion of the patients’ own stem cells to reboot their immune systems. “Maintenance” drugs are no longer necessary since the immune system has now been taught to not attack itself anymore and some patients even experience a reversal of their disability levels.
In November 2015, Margaret traveled to Chicago for the much-awaited evaluation with Dr. Burt and learned that she is a good candidate for the trial! It will require a 5-year commitment to travel periodically from her home in Florida to Chicago for treatment and checkups. Margaret will need to cover the cost of travel (flights, hotel stays, food) as well as any medical expenses (deductibles, co-pays) not covered by insurance. This is a challenge she cannot face alone.
To help with the financial burden of Margaret’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the Southeast Stem Cell Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please, consider a contribution.
For credit card contributions, please click the yellow Donate Now button.
This year, instead of raising funds for the National MS Society (as we typically do), we are focusing our fundraising efforts to help Margaret with the expenses related to this amazing stem cell transplant opportunity. Thank you so much for your support – it means more to us than you could ever imagine.
With sincere gratitude,
The Family and Friends of Margaret Dunlap
June 6, 2016
New blog post up! Pre-admission endeavors and PICC line placement! In the hospital for pre-transplant meds now, followed by my stem cell transplant/birthday on the 7th! Here is the most recent blog post, will update again soon 🙂 http://savemymyelin.weebly.com/blog/the-beginning-of-the-last-leg
June 2, 2016
Heading to Chicago tomorrow for the final leg of the transplant! Please follow my detailed updates on http://savemymyelin.weebly.com
April 19, 2016
I have updated my blog – pretesting this past week! http://savemymyelin.weebly.com/blog/the-long-awaited-pretesting
Thanks for reading and thanks for your support!
April 9, 2016
I’m about to go to Chicago for my pretesting! I will be flying out on Sunday, the 10th, and pretesting goes from the 11th to the 13th. My sister, Laura, will be joining me in Chicago through this part of the journey. The week after, I will know which “arm” of the trial I am in – very exciting! Fingers crossed and positive energy for the stem cell transplant arm! There are also some new, more detailed updates on my blog: http://savemymyelin.weebly.com. Thank you for all of your support and positive thoughts!
February 18, 2016
I now have a “tentative” schedule for my pretesting – just waiting on the scheduling team to confirm the dates of April 11th – April 13th! Approximately a week after pretesting, I will be randomized to either the “control (medication) arm” or the “transplant arm” of the study. Positive thoughts for the “transplant arm”! If I am in the “transplant arm”, the transplant process will begin in early May and go through mid-June. More details can be found on my blog: http://savemymyelin.weebly.com/blog/im-leavin-on-a-jet-plane-well-in-about-two-months. You can also subscribe to my blog now – enter your email address and first name in the “subscribe” area below my picture on the right side of the page – savemymyelin.weebly.com. I will send out an email each time I update my blog with more exciting details! Thanks to everyone for their support!
January 29, 2016
I have obtained insurance approval for the clinical trial!! This is all so exciting as this means I can move forward with pretesting, and then I will be randomized into one of the study groups. Please click on the link below to read more details on this great step in the right direction! You can also now subscribe for email updates to my blog using the form right below my picture on the blog page. Thanks for all your support!
January 25, 2016
Forgot to post this the other day! I spoke with my Transplant Case Manger at Cigna on Wednesday who seems to think I should not have any problems getting approval for the clinical trial! It is not 100% definite yet, she has to speak with her medical director, but I am supposed to hear an answer no later than Tuesday of next week. She also informed me of some other positive details that I was not aware of! Please read more details on my blog at: http://savemymyelin.weebly.com/blog/and-the-verdict-is-almost-in. Thanks so much!
January 18, 2016
Guess what!! I have a case manager with the Cigna LifeSOURCE Transplant Network – yay!! (https://cignalifesource.com/transplant-network/index.html?) This is the team over at Cigna that processes requests for transplant. Does this mean I have approval yet? No, (not yet!), but the process is in motion, which is an exciting step in the right direction. To read more about this update, please check out my blog – http://savemymyelin.weebly.com/ – for more details and some pictures from over the holidays! 😉 Thank you all for your support!
January 13, 2016
Hi everyone! Sorry no updates lately! Just waiting on a response from the new insurance agency. Getting a little anxious, as I think I should hear something from them soon 🙂 Fingers crossed for good news sometime this week or next!
December 22, 2015
A new post on my blog is finally up! http://savemymyelin.weebly.com/blog/new-insurance-headache-gone I’ve updated some advancements with insurance decisions and added some fun family events that I was able to enjoy after my insurance headaches were gone! 😉 Thanks for following me on this journey! You all are amazing!
December 9, 2015
Thanks again so much for all of your support! By meeting (and surpassing!) the $10,000 fundraising mark, HelpHOPELive will be awarding me a $1,000 challenge grant towards my campaign! This is so exciting and I owe my thanks and gratitude to all of YOU!
After speaking with my fundraising coordinator today, we have decided to increase my fundraising goal. After looking at insurance plan options over the last two weeks, unfortunately it looks like insurance costs alone are going to be much more that I expected 🙁 Florida does not have the best plans to choose from, and even those with higher monthly premiums still have a high out of pocket maximum to factor into the cost. Hopefully I will be choosing the right plan and will obtain approval for this amazing stem cell transplant trial. Then the cost of the plan will be worth it!
Thanks again for everyone’s support – your love and kindness are very much appreciated 🙂
December 8, 2015
Words cannot express how loved and supported I feel right now. I am surrounded by such wonderful and loving people. Thank you all so much, including those anonymous people that I can’t even send a thank you note to!!!
December 2, 2015
A quick update – my current insurance company, Health First Health Plans, has already denied coverage for the treatment. I figured they would, so that was pretty expected. The doctor’s office will be submitting an appeal, but I will likely be signing up with a new health insurance company with broader coverage for an effective start date of January 1st. And then the approval process starts all over again! But I will be going with a company that has a better track record of coverage for this treatment, so hopefully it will be a quick process! That’s pretty much it for now! Thanks so much to all my new donors as well!
December 2, 2015
Wow… Thank you all so much for such an amazing, overwhelming start to my fundraising campaign! I was taken aback this afternoon when saw the amount that my generous friends and family have already donated to help me on this amazing journey. I want you all to know that your support is appreciated so very much and it means the world to me 🙂 You all are amazing 🙂
Photo Galleries (1)
December 9, 2015
You are an amazing sister, daughter, wife, and mommy! We are praying that this treatment brings you much relief from your many conditions. We love you and are here for you every step of the way!
Leo, Theresa, Penelope, & Alistair
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In honor of Margaret Dunlap
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