HemoTool

03/15/2022

“No Family History”…

“Challenge Accepted”…Featuring “Real” people, (like me ☺️) that are faced with the every day challenges of living with or caring for a loved one with a bleeding disorder!

In Season 2, Episode 2…”The Missing Gene!” What a trip down memory lane, as I too walked in Joey and Michelle’s shoes over 25 years ago! Getting the right diagnosis is a challenge within itself, however, getting that diagnosis when there's “no family history” can be a Huge mountain to climb!

Some episodes of Challenge Accepted feature those with really big names like , (recognized from The Marvelous Mrs. Maisel and as the voice of Lois on The Family Guy), former World Federation of Hemophilia President, Mark Skinner, well known for a multitude of achievements throughout his many years within the bleeding disorders community, Tae Bo’s Billy Blank, Dr. Oz…and even the “not so big names”…again, like Me!!! ☺️

It’s and the timing couldn’t be more perfect to see if you can solve the mystery of “The Missing Gene”!!! Genentech’s “Challenge Accepted” short videos are a must see!

Copy and paste the following link to watch this episode:
bit.ly/34WtgTj

Thank You and to for ALL you do for our community! 🩸

07/23/2021

While Dakota and I are saddened there will be no camp shenanigans again this year due to on the rise, we are hopeful we will see our camp family that we dearly miss in 2022!
Thank you Midwest Hemophilia Association for putting us all first in your efforts to keep us all safe and healthy!

06/15/2021

And…Done!

Thank You to my FAVORITE PharmD, Dakota, for making a special trip to give my 2nd 🙌🏼

Can I please put my record in “my” baby book??? It is considered to be a milestone…Right??? 😉

✔️

05/31/2021

Live your life in a way that would make them proud...🇺🇸

Today we honor the men and women that made the ultimate sacrifice for our freedom! While we can never repay them, we can “Thank” them and remember them.

05/12/2021

Pretty cool to be vaccinated by my favorite PharmD...Thank You Dakota!!!

I may have been a bit dramatic and have to admit, a bit worried he would enjoy it too much if he remembered ALL of the infusions I missed and had to stick him multiple times when he was little! 😝

03/30/2021

“Every March, Bleeding Disorders Awareness Month is a time to advocate for important issues for people managing these rare conditions and celebrate individuals who are making a difference. Dakota Rosenfelt, PharmD, RPh, is a Medical Science Liaison in rare blood disorders at Genentech who also lives with hemophilia A.”

“What was life like growing up with hemophilia?”

“Have things changed for the hemophilia community since you were first diagnosed?”

“How did your interest in the medical sciences develop and how have you continued to pursue this?”

“How do you see research and data making an impact for the hemophilia community in the near future?”

“What advice do you have for the younger generation of the hemophilia community?”

As the month of “Bleeding Disorders Awareness” comes to an end, advocating for our community will continue all year long! Follow the link I’ve shared as Dakota describes, in his own words, the impact of living with hemophilia has made on his life.
-Kimberly, Dakota’s Mom 😊








Genentech

Growing up with severe hemophilia A, Dakota Rosenfelt was inspired to pursue his interest in medical sciences.

03/09/2021

It is heart wrenching and emotionally taxing for any parent to watch their children live with debilitating pain.

Due to insurance restrictions following Dakota’s diagnosis of Severe Hemophilia, FVIII deficiency at 13 months, he was treated, (infused) “on demand” for several years. Unfortunately, he sustained multiple bleeds in his left ankle, (target joint) resulting in bone on bone in his early 20’s.

His only available options to relieve the pain are to fuse his ankle, (this is not conducive to his activity level) or an ankle replacement, (this is not a feasible option due to his age.)
We are determined and will stop at nothing to find a solution to ease his pain and to improve his quality of life!

Many have asked about the latest journey we have embarked upon in hopes to provide relief from the daily excruciating pain. In our extensive search, we discovered a fairly new therapy; a stem cell-based, cartilage regeneration therapy.

It’s a 4 step treatment process that includes a laser treatment each time to promote circulation in the joint:

First Step:
PRP (Platelet Rich Plasma)

Second Step:
A*M (Alpha 2 Macroglobulin)

Third Step:
Stem Cell

Final Step:
PRP (Platelet Rich Plasma)

We are halfway through as he has recently completed the second step! Dakota has had great results so far, as he can walk and continue to workout 6 to 7 days a week with full range of motion and most importantly, without pain!

This may not be a lifetime fix, but we are hopeful and remain positive this treatment will provide many years of pain relief, that IS the ultimate goal! 😊

01/18/2021

10 Facts About Martin Luther King Jr.:

* Martin Luther King Jr. skipped two grades in high school, 9th and 11th, and entered college (Morehouse College) at the age of 15 in 1944. By 19, he received a bachelor’s degree in sociology.

* His honeymoon was spent at a funeral parlor. This was not because someone died, simply because a friend owned the parlor and offered to let him use it for his honeymoon.

* His house was once bombed. This was during the Montgomery Bus Boycott, which lasted 385 days.

* Martin Luther King Jr.’s autopsy revealed that stress had taken a major toll on his body. Despite being only 39 when he passed away, one of his doctors noted that he had “the heart of a 60 year old”.

* Today over 700 streets in the Unites States are named after Martin Luther King Jr. There is one such street in almost every major city.

* King’s “I Have a Dream” speech was not his first at the Lincoln Memorial.

* King narrowly escaped an assassination attempt a decade before his death.

* Members of King’s family did not believe James Earl Ray acted alone.

* King’s mother was also slain by a bullet in 1974.

* George Washington and Abraham Lincoln are the only other Americans to have had their birthdays observed as a national holiday (now combined as Presidents Day.)

01/13/2021

Shared:
The American Society of Hematology, ISTH,
NHF, and WFH Guidelines on the Diagnosis and Management of VWD were published today and are freely available to all online. Developed by experts from around the world on diagnosing, managing, and living with VWD these evidence-based recommendations offer guidance for shared decision making and a foundation for advocacy:

www.wfh.org/VWDGuidelines
Please visit to learn more!

American Society of Hematology
World Federation of Hemophilia / Federación Mundial de Hemofilia
International Society on Thrombosis and Haemostasis (ISTH)
National Hemophilia Foundation

01/01/2021

A fresh fallen snow is an untouched canvas...may your “untouched canvas of 2021” be filled with many blessings, good health and joy!




#2021

12/26/2020

From our home to yours...
Whether together or apart...
We hope this holiday season, though it may be a little different this year, has been filled with joy!