TMS Quarterly Newsletter

Second Quarter, June 2023

The Chair’s Corner

Members of Team TMS at the Blueprint Offices.
Pictured L-R: Rose Schultz (Board Member, Judi Emmel (Board Chair), Jenni Nicoloro-SantaBarbara, PhD (Board Member), Susi Jennings (Principal Research Scientist)

Greeting TMS Community!  As spring has turned to summer things have gone from busy to even busier for #TeamTMS. These past three months have been full of support activities, researchers digging into data, and the exciting news regarding the FDA approval of Ayvakit to treat Indolent SM.  Let me fill you in…

Last month, a few members of TMS leadership and I  were invited to Blueprint Medicines Headquarters  in Massachusetts to tour their facility, talk about TMS and meet their team – known as the “Blue Crew”.  Well, they say timing is everything and it was!  Two days prior, the new FDA approval came through, so this became not just a visit…but a celebration!   We had an opportunity to speak at their company meeting, which they broadcast around the world, and share what it means to our membership to have a new FDA approved treatment option available. They asked us to thank our members for participating in the trials that brought about this accomplishment, and we thanked them for their persistence and dedication to the pursuit of cures for mast cell diseases.  It was a phenomenal opportunity as you can tell from the smiles in the pictures.

Another exciting update I’d like to share is that our TMS Board has been revamping our committee structure so that we can serve the community even better. Our vision is to stand up active committees made up of both board members and TMS community volunteers to help work toward our goals and initiatives and make them a reality for our community. We want to broaden our team and get different viewpoints and ideas.  

To make this a reality and develop committees that can get things done, we need your talent and whatever time you can contribute.  And should you have a specialty like finance, legal, policy, research, or writing – you are in high demand. If you are interested in volunteering, please visit THIS LINK and complete the form. We welcome anyone who wants to give back to the community to complete the application process. 

Speaking of volunteers, I have to give a shout out to the amazing TMS VOLUNTEERS who work around the clock!  We say it all the time and I’ll say it again, TMS wouldn’t exist without the support, commitment, and the gift of time from these people.  The support group leaders, nurses, researchers, social media moderators, fundraisers, and board members are the ones who make magic happen for TMS. We are grateful for each and every volunteer working with TMS now and we always have room for more. In fact, stay tuned…we hope to implement a volunteer reward program in the next few months. Look for more information as we continue to make things happen. 

We hope you will take the time to read the entire June newsletter, as this issue is packed with great information and updates, a powerful story, and upcoming events to keep an eye on.  If you have an article or want to be a guest columnist in future newsletters, we welcome your ideas and input. Just drop us an email. 

Finally, as we go out to enjoy summer, we also know that there are triggers lurking!  Please take care in the heat, in the sun and especially with travel (should you be able to get out and about).  Those of us with mast cell issues know how to pay attention and be prepared.  My sincerest hope is that everyone has a happy, fun, and healthy summer enjoying friends and family, and if you can’t be in a large gathering or just want to stay home, sometimes a good book with a Beach Boys song in the background is the perfect way to spend a lazy summer afternoon.   

Be well, Judi

Patient Voices

Leah’s Story

By Dr. Leah Kelly CCC-SLP, AUD, MM Speech Pathologist, Audiologist, Vocal Specialist

I am a Speech Pathologist, Audiologist and Vocal Specialist. This is the story of how a prolonged toxic chemical exposure almost killed me, led to my diagnoses of MCAS, and completely changed my life.

In January 2019, I was a full-time hospital employee in Pascagoula Mississippi. On January 25, 2019, the hospital maintenance crew was conducting demolition of the offices adjacent to mine. That day they were removing the sheet rock, electrical wires, drop ceiling tiles and bathroom plumbing that was directly on the other side of my office wall.

Unfortunately, they had not set up the OSHA required barrier between my office and the chemically toxic demolition area. As the crew demolished the wall and ceiling with sledgehammers, and metal cutting saws, they created intense vibrations that shook my office wall and ceiling. At one point, my wall shook so violently that it felt like they were coming through the wall. I knocked on the wall to get them to stop and I yelled, “Hey!!!! Ya’ll don’t accidentally saw through my side of the wall. I am right next to the wall working on the computer.” I hear them laugh and return to the demolition. 

The deteriorated 1965 drop ceiling tiles in my office shook and shifted as they vibrated. They sheared across the metal T-bars of the drop ceiling releasing a fine dust and airborne particulates of toxic substances that rained down on me for 6 hours as I worked. It was all over my skin, my hair, my scrubs, and my shoes. As I worked, I swallowed and inhaled the toxic particulates as I talked and breathed.

After 6 hours of the exposure, I began to feel nauseous with a dull headache. An intense burning sensation started under my skin on my back and neck, and I knew that something was very wrong. I ran to my supervisor and asked her to look at my skin to see if I had a rash or something where the burning was the most intense. At the sight of the skin on my back she gasped and said, “Oh my God.” She quickly gave me an incident report and told me to leave the building immediately and go to the emergency room as soon as possible.

My condition quickly spiraled downhill from there. The dose of toxic substances and time of exposure was completely overwhelming my entire body. I was developing a severe systemic inflammation. Breathing became difficult and the intense burning under my skin felt like hot lava. Within the first 24 hours, I used 4 Epi-pens to keep my airway open and I took every medication I could think of to decrease the inflammation. At 47 years old, I had experience dealing with allergies, but I NEVER had to use an Epi-pen (peanut allergy). This was nothing like allergies and I was scared.

Read the Rest of Leah’s Story

News You Can Use

Patient Support Updates

July Support Groups

TMS has several dynamic support groups* to choose from. You can register for an upcoming meeting below or by clicking HERE. You can also visit our other online communities to stay connected. Our Women’s Group won’t be meeting in July- we hope that it will be able to return in August!

Upcoming Meetings:

General Adults & Regional Groups 

Parent & Caregivers Support Group

Work Life Support

Men’s Group

Parenteral Nutrition & IV Therapies Support Group

POTS Support

Healthcare Professionals Support

  • July 10th at 5pm EST, Leaders Debbie McGee & Stacy Liebman, Register Here

Positivity Group

Fiber Arts with the ED

Keep an eye out in August when TMS will begin to offer a Mastocytosis Support Group- courtesy of leader, Pam Hodge!

Nurses Line

TMS nurses are standing by to support you through your medical journey! We can be reached at Nurses@tmsforacure.org.

*To read our Support Group rules and regulations click HERE.

On our Site…

Website Update: We recently updated our Clinical Trials page. In addition to accessing the link for ClinicalTrials.gov, you can also access a list of saved searches containing common mast cell disease related terms, from ClinicialTrials.gov.

Recent Blog Posts:

News from our Rare Disease Community

The registration for Rare Across America has now opened, with the program scheduled for August 7th to 18th this year. We’re really excited to bring the community together once again to meet with their Members of Congress and share their rare disease story. We welcome you to share with your patient communities who may be interested in participating! Registration closes on July 11th. We’re especially looking for advocates in the Dakotas, Montana and Iowa, in case you know anyone!

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If you have any questions, please feel free to reach out to Ted Brasfield at tbrasfield@everylifefoundation.org!

Any Amount Helps

We rely on your generosity to advance our mission and provide the best support possible to our community. Together we have accomplished big things in the past few years

·    Grown the number of support groups,

·    Increased the number of volunteer nurses that can help to answer questions,

·    Hosted two health care provider education programs, where 76 health care providers learned more about mast cell disease.

Whatever amount you can give allows TMS to continue its mission of supporting the mast cell disease community. We believe that working together, we can improve the quality of life for patients and provide hope for a healthier tomorrow. 

Donate Today

How you can help!

VOLUNTEERS WANTED!

“I really value volunteering for TMS because when I was at my worst health wise I found the TMS! I have come so far with the help of people willing to give me their time and point me in the right direction. If I can help other people the way I have been helped, then it is certainly worth my time!” -Pam Hodge

The Team @ TMS is working diligently to fulfill the mission and vision of TMS. We are expanding offerings across our strategic pillars; patient support, physician education and awareness, and both conducting and funding research for a cure.

Even though we are hard at work we can not do this without you! We are always looking for dedicated volunteers.

Things we could use help with include: Nursing, Finance, Legal, Research, Medical/Scientific Writing, Fundraising.

If you’re interested in volunteering with TMS, please click HERE! If you have questions email Lindsay Frazier at volunteer@tmsforacure.org.

Stay in Touch

Stay up to date on all things TMS- follow us on social media!

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LinkedIn @tmsforacure

Twitter @mcdiseasesunite

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Thank you to Cogent Biosciences, Our Partner in Hope Gold Member for 2023-2024