Recently, several of our board members were invited to tour the lab that is making great strides in NF research. Dr David Largaespada , the physician in charge of the lab, personally gave us a tour.
The research lab is divided in to multiple sections, each following a specific agenda. Each professional was very open with us and excited to talk about their area of research.
Dave Reischel, a board member and an NF patient, had this to say about the tour. “Recently I toured a research lab focused on advanced scientific techniques for treatment of those with NF1. They are performing trials on tumor suppression & tumor reduction using existing drugs / pharmaceuticals already approved for other disorders. Also being researched is using genetically targeted therapy based on specific tumor cell type.” Thank you for sharing your comments Dave!
It is so exciting to know that research is ongoing to help the thousands upon thousands afflicted in varying degrees with NF.
We also met up with another small organization like ourselves that is dedicated to the fight for NF. This organization is also pleased as well as excited about where Dr. David Largaespada’s, Ph.D research is going.
Like our Myshell, Zachary Bartz lost his fight with NF at a young age. Both children fought the fight and wished for their families to continue this for them. The Bartz family has been raising funds with an annual golf outing among other efforts.
You all know where this is going right?? So we have met the folks that we wish to partner with in living out Myshell’s dream. We feel confident, and blessed if you will, to have found the research team that will help us make that a reality.
But you know we CANNOT do it alone! We need YOUR help. Myshell began the first annual walk for NF held annually in Chippewa Falls, WI. Myshell’s walk has been renamed and with a new purpose we are quickly approaching the 2nd Annual Kick It In The Park for NF on May 18th, 2019. (https://www.facebook.com/events/544867055993217/)
Not only will you get some exercise, make new friends, greet old ones, eat good food, get a chance to win tons of raffle prizes, you will help us help the entire NF community. First and foremost our funds and efforts go towards the people directly in our midst suffering from NF. But keep this thought going – if, by helping OUR community, we help a wonderful research team, we ARE really helping a greater community at large Kick NF!
A large number of the people in our geographic area see doctors at the University of Minnesota. For those that don’t the university shares their findings with many other institutions and doctors.
Dr. David Largaespada, Ph.D., is a Full Professor in the Departments of Pediatrics and Genetics, Cell Biology and Development and the Associate Director for Basic Research in the Masonic Cancer Center at University of Minnesota.
He is an authority on mouse genetics, gene modification and cancer genes. He received his B.S. in Genetics and Cell Biology from the University of Minnesota, Twin Cities in 1987 and his Ph.D. in Molecular Biology with Dr. Rex Risser at the University of Wisconsin-Madison in 1992. He did a postdoctoral fellowship at the National Cancer Institute working with world-renowned geneticists Dr. Nancy Jenkins and Dr. Neal Copeland, where the Leukemia and Lymphoma Society of America awarded him a postdoctoral fellowship.
He joined the faculty of the University of Minnesota in late 1996. Dr. Largaespada currently holds the Hedberg Family/Children’s Cancer Research Fund Chair in Brain Tumor Research. He was awarded the American Cancer Society Research Professor Award in 2013, the highest award given by the ACS.
(from https://www.cancer.umn.edu/bio/cancer-center-leadership/david-largaespada).
April 1st, 2018 both Wisconsin and Minnesota made serious changes to their Medicaid programs. One of the changes left most Wisconsin residents unable to see physicians at the University of Minnesota. Among those effected include Wisconsin children that have been diagnosed with Neurofibromatosis.
While this was bad news for many, it caused a great impact on the Northern Wisconsin children as Dr. Christopher Moertel, at University of Minnesota, was the closest physician with a practice specializing in Neurofibromatosis.
Dr. Moertel recently contacted the board of NF First and informed them that due to a state resolution, he is once again able to provide medical care to residents in the previously denied area.
The board, and Dr. Moertel, are very excited about this change. Dr. Moertel is a Pediatric Neuro-Oncologist at University of Minnesota Masonic Children’s Hospital
April is autism awareness month. Since autism is a disorder often seen concurrent with NF 1, it is our hope that the information below will promote understanding and awareness of ASD, both in conjunction with, and separate from, NF 1.
Autism Spectrum Disorder (ASD) is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior. The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity. (Mayo Clinic https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/symptoms-causes/syc-20352928)
Autism Spectrum Disorder affects every race, gender, socio-economic background, and has no outward visual signs. Some of the behaviors associated with autism include delayed learning, and expression of, language; difficulty making and maintaining eye contact; poor motor skills; sensory processing sensitivities; difficulty with reasoning and planning; and narrow, intense interests. Please note, these are just a few of the issues a person on the spectrum may face every day.
Making this a bit more personal, many of our blog readers are aware that I am the grandma of a young teen with NF 1. What many of you may not know is that he also is autistic. On any one given day, it is often difficult to say which is the dominant disorder. That scenario makes the information in the JAMA Psychiatry article quoted below seem pretty important.
It has been noted that NF 1 (neurofibromatosis type 1) and autism are often seen in the same patient. “NF1 is caused by mutations in a single gene” said first author Stephanie M. Morris, MD, an instructor in neurology. “Our research indicates that this single gene also is associated with autism spectrum disorders in these same patients.”
(JAMA Psychiatry October 19, 2016)
Look for a discussion of current research here in the near future!
And I would like to leave you with one thought that I believe also applies to those affected by NF 1 and ASD taken from The Joy of Autism------
The Definition of a Hero
A child, or adult with special needs, who puts his feet on the floor every morning, ready to try again.
May 17, 2018 was World Neurofibromatosis Awareness Day, the main goal of which is to raise awareness of the genetic condition neurofibromatosis (NF). Sadly, many people are unaware that the condition even exists, let alone the impact it has on those living with it. Despite it being more common than Huntington’s Disease, Cystic Fibrosis and Muscular Dystrophy combined, many healthcare professionals have never heard of the condition.
Neurofibromatosis Type 1, Type 2, Schwannomatosis. People living with neurofibromatosis can develop tumors along their nervous system which can be itchy, painful, and can cause medical complications. Not all tumors are visible. Neurofibromatosis often comes with an assortment of comorbid conditions such as scoliosis, autism, visual impairments or audio impairments. Neurofibromatosis is genetically dominant, which means it can be passed on to your children. If you have been diagnosed with NF there is a 50% chance that your child will be born with NF.
Locally, on May 17, 2018, an interview of NF First board members conducted by Aaron Rhody of WQWO 18 News (Eau Claire) was broadcast. The discussion centered around the groups upcoming first annual walk, Kickin It in the Park for NF on May 19, 2018 at Irvine Park and the forming of the local foundation, which was a dream of Myshell Reith who lost her life to NF in September 2016.
Although May 17th is set aside as a World Day to raise awareness, the entire month of May is NF Awareness month. Awareness is a need focused on daily by those afflicted and their families.
Shine a light on NF is a grass roots movement that began with the purpose of bringing awareness to as many communities as possible.
On May 17th, 2018 the following states lit up public buildings and bridges to celebrate World NF Day!
| Alabama | Kentucky | Pennsylvania |
| Arkansas | Massachusetts | Rhode Island |
| Colorado | Michigan | South Dakota |
| Connecticut | Minnesota | Tennessee |
| Florida | Missouri | Texas |
| Georgia | Nebraska | Utah |
| Illinois | New York | Virginia |
| Indiana | North Carolina | Washington |
| Kansas | Ohio | Wisconsin |
Springtime – is a time for renewal, a time for hope, a time for awareness. Awareness of our community and what goes on around us. Walks are one way many organizations choose to bring awareness to a community as well as raise funds to further spread that awareness and support.
Did you know -- that the first ever walkathon was crafted in 1953 by Puerto Rican actor Ramon Ortiz Del Rivero? He walked 80 miles for the Puerto Rican League Against Cancer.
In 1968, the first walkathon held in the US was sponsored by the American Freedom from Hunger Foundation. The walkathon drew over 3,000 walkers to the 33-mile route through the streets of Minneapolis with many of the walkers being children. The local organizers convinced comedian Johnny Carson to promote the event.
Today, millions of people worldwide take part in walkathons annually, and they are still one of the primary avenues for nonprofit peer-to-peer fundraising.
Raising awareness through walking and helping with community projects (see photos for some recent efforts by NF First) was a dream Myshell Reith had when she lost her battle with neurofibromatosis in September 2016. Myshell’s family has undertaken the journey of making her dream a reality.
At NF First, our main means of fundraising is our annual walk “Kickin It in the Park for NF”. This year the event will be held on May 19, 2018 at Irvine Park in Chippewa Falls. This year’s walk will be hosted by Alex & Cora of WAXX 104.5's Morning Show! For this walk you can form a team or walk as an individual. You can dress in costumes or come as you are! Will YOU join US on this journey to kick NF to the curb?
