(C) Daily Kos
This story was originally published by Daily Kos and is unaltered.
. . . . . . . . . .
Top Comments: My Mother the Advocate Edition [1]
['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.']
Date: 2025-01-28
I heavily debated the topic of tonight’s diary. Part of me wanted to rant about fascist in power and his attempts to cut off federal funding for all sorts of programs including Medicaid, which could end up killing me. Instead, I will write about the topic I planned for last week which is an uplifting story and is probably needed right now.
Ass I have written previously, I was diagnosed with a rare genetic illness soon after my 5th birthday. The hospital where I was diagnosed had a geneticist who was well-versed in my illness and know of a parent support group devoted to families who had children or adults who had my and similar illnesses called The National MPS (Mucopolysaccharidosis) Society (The Society). The then president of the organization lived about 30 minutes from us on Long Island. My geneticist gave my mom the phone number to contact the organization and thus her and my mom immediately reached out. My mom was determined to find out everything she could about my illness and how we could manage it.
On that first phone call she made to the president, she made either the smartest or dumbest (depending on your view) she could have by saying she would be available to do whatever she could to help out. That statement lead to a 12 year “career” as either the VP oor Treasurer or both of the organization. I would follow later as a board member for 8 years myself.
Within a few months of us joining the organization, the Society hosted its first ever conference on MPS, ML & related disorders in Bethesda, MD at the NIH. Since my mom said she would do whatever was needed, she was tasked to bring all the conference materials to the conference since she would be driving down to Maryland. Unfortunately for her and me, the night before she was set to leave, I choked on a hot dog. Obviously, everything was fine as I am here writing this, but she had no choice but to leave me at the hospital with my dad (not my preference) as she had everything for the conference and there was no one to whom she could give the stuff. Commitment, huh? It shouldn’t be much of a surprise that during the next round of elections my mom was elected to the position of treasurer later becoming vice president.
At the first two conferences she attended, she spent much of her time speaking with the various physicians and researchers to gather as much information as possible to be as knowledgeable as possible about my illness. As I wrote about a few weeks ago, this allowed to always be armed with info to fight my clinicians when they tried to push treatments and tests that went against the advice of the experts we knew. She also frequently got people’s personal or office numbers to be able to reach out to them in order for them to be able to consult with my person doctors.
The biggest impact she had on both the organization and the MPS community writ large came in 1988 at the first International Conference on MPS and related disorders at the University of Minnesota-Minneapolis. The Society had decided it would have one of it’s semiannual conferences in conjunction with the International Conference. As treasurer of the Society, she and the board directors decided they would make a donation of $5,000 out of annual budget of $50,000 to help fund the conference. Quite a large donation for a small parent support group. In exchange for this donation, my mother made two requests/demands to the chair of the conference, Dr. Chester Whitley. First, any member of the public/Society could sit in on any of the scientific panels and ask any questions they wanted. Two, the researchers and physicians would be required to attend The Society’s banquet dinner. My mom wanted to ensure the families would be able to have access to all of the researchers and physicians who would be in attendance rather then to one of two who usually attend the regular Society conferences. My mother had one additional idea up her sleeve. For the banquet rather than allowing everyone to sit where they wanted, she assigned different doctors and physicians to specific tables and allowed the families to sit where they wanted. This enabled families to sit with and talk with the specific people who were involved in their specific illness.
Prior to this conference, none of the researchers and physicians had ever truly interacted with the kids and adults who they working to help in such a meaningful way before. Maybe some of the physicians having seen patients had some interaction with people but usually only in a clinical setting. Researchers, OTOH, had little knowledge of the people for whom they were trying to find treatments and cures. In fact, quite a few of them had never met a child or adult with one the illnesses before. All of them went back to their labs and universities and practices with pictures, stories, and messages from families and children. I don’t think there was one person who attended that conference that didn’t go back with a newfound vigor to make something happen and fast. From that one conference, research into MPS and ML, other lysosomal diseases exploded in way people thought would take decades to achieve. This all from the idea of one person, my mom.
I could say more about the way my mom dealt with scientists and doctors when comes to me and my illness including once asking a question of a researcher about a potential treatment he seemed to dancing around in his presentation that no one else seemed to want acknowledge, namely that it was a failure. In all these years, she hasn’t changed a bit. LOL
I hope everyone is getting along alright with the disaters being fostered upon us by the convicted felon squatting in the Oval Office. Stay strong!
Diarist reserves all rights to his original writing only. Community material is not covered by this ©
Now a word from out sponsor and onto the Tops!
Here at Top Comments we welcome longtime as well as brand new Daily Kos readers to join us at 10pm Eastern. We strive to nourish community by rounding up some of the site's best, funniest, most mojo'd & most informative commentary, and we depend on your help!! If you see a comment by another Kossack that deserves wider recognition, please send it either to topcomments at gmail or to the Top Comments group mailbox by 9:30pm Eastern. Please please please include a few words about why you sent it in as well as your user name (even if you think we know it already :-)), so we can credit you with the find!
Top Comments for january 28, 2025
None :(
TOP MOJO january 27, 2025
First comments and tip jars excluded. Thank you mik for the mojo magic! For those of you interested in How Top Mojo Works, please see his diary on FAQing Top Mojo.
[END]
---
[1] Url:
https://www.dailykos.com/stories/2025/1/28/2299767/-Top-Comments-My-Mother-the-Advocate-Edition?pm_campaign=front_page&pm_source=more_community&pm_medium=web
Published and (C) by Daily Kos
Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified.
via Magical.Fish Gopher News Feeds:
gopher://magical.fish/1/feeds/news/dailykos/
