We are very sorry for not keeping up to date on this page.
We just had a Raffle for Raquel and received $575.00 for THE SNOW FOUNDATION to cure Wolfram Syndrome.
Thank you so much to all of our clientele for their generosity. We can't tell you how much we appreciate it. Here is a video of our drawing, held January 17, 2019.
I think that is J.T. Snow holding Raquel in the back row on the right.
Townsend Music school will give you $20.00 off your first quarters tuition
if you donate at least $50.00 to The Snow Foundation.
We will give you $40.00 off your first quarter if you donate $100.00 or more.
I just started a new student, Raquel Gebel on February 28, 2017. I'll never forget that date. Raquel is a wonderful, sweet, extremely intelligent and beautiful 12 year old girl. She wants to learn how to play the piano! And she will. I will make sure that happens.
Raquel has Wolfram Syndrome. Her eyesight is amost gone, she will lose her hearing, and has other complications. Wolfram will attack other organs as well as cause cognative degeneration. Many Wolfram patients do not make it to 30 years old.
There are only 1000 cases of Wolfram Syndrome in the United States. It is so rare that many doctors have never heard of it. WE NEED TO SPREAD THE WORD, WE NEED TO GET THIS OUT THERE AND LET PEOPLE KNOW!!!!
This is URGENT! They are working on a drug right now that may stop the progression of Wolfram. That would save Rachel's vision and her hearing. PLEASE!
DONATE TO THE SNOW FOUNDATION
Please click "DONATE", and donate if you can. Then scroll down and click "Donate by Shopping Amazon Smile". Bookmark AmazonSmile and always use that bookmark when shopping Amazon. (the app won't work). They will donate .5% of your purchase to The Snow Foundation. IT WILL COST YOU NOTHING.
A cure for Wolfram Syndrome is a cure for diabetes. They are already testing a drug to stop the progression of Wolfram. Raquel is one of the test patients getting the expermental drug. This research is getting results!
Now, read my blog down below, sign up for music lessons with us, watch this moving video, and go to The Snow Foundation website! Then tell all your friends. Spread it via social media, word of mouth, any way you can.
If no one told you, you wouldn't know anything was wrong with Raquel. She is such a special person. Just think, we added a whole page to our website devoted to her. We will not stand by and let this happen if we can do ANYTHING to help stop it.
At her 5th lesson
My plan is to make some sort of videos of Raquel's progress in piano . I want to keep some sort of blog or vlog as we go along. Her mom, the unbelievably strong, wonderful Stephanie Gebel, has given her permission. I want to make SURE that it's ok with Raquel. I think she will say yes, but I don't want to put pressure on her. (She has now said it's fine...see video)
I will try to keep a week by week account of how we things are going, what we are doing, and how we are doing it with a weekly blog. There will be videos of lessons plus my thoughts. I hope it's interesting.
April 27....supplemental blog.
I went to my doctor for a checkup today, and told him about Wolfram Syndrome and Raquel. I have talked to the many doctors that I know, and like them, he had never heard of Wolfram Syndrome. I told him about the vision loss, the hearing loss, and all of the other problems including the fact that most Wolfram patients don't live past 30 years old. I'm going to paraphrase...Just a few years ago a child with (and then he named a condition I can't remember) was not expected to live very many years, maybe not to live at all. Now these kids are living well into adulthood and are expected to live longer and longer. Amazing breakthroughs are always occurring. There's a very good chance they will find something to help Raquel.
As his patient, I have never known him to be wrong about anything.
I already know that they will find something to stop the progression of Wolfram and then find a cure. I just believe it so strongly. But to hear it from a fine doctor that I hold in the deepest respect was, to say the least, encouraging.
It also makes clear the need for more funding for the research that is going on at Washington University which The Snow Foundation is funding. They need the funding urgently. Most people have never heard of Wolfram, so you can imagine the problems in getting donations.
Please tell your friends about Wolfram Syndrome. Post about it on your Facebook, Twitter, or wherever you can. And make a donation.
I am so excited to be able to be doing this. I only hope that it will raise awareness about Wolfram Syndrome and will help, in some very small way, to find a way to stop the progression of this disease. I believe every individual makes a difference, so please join me in this fight to save and or restore Raquel's sight, hearing, and eventually save her life.
I am getting to know Raquel a lot better, and the more I know her the more I am inspired by her. Her friend Emily came to the lesson, and it was one of the most rewarding piano lessons I have ever given. Raquel worked so hard without a break all the way throughout the lesson, which ran 10 minutes over the 45 minutes we were supposed to have. She now has learned "My Shadow" & "Mary Had a Little Lamb", both with two hands, and has a good start on her favorite song, "Pieces" by Rob Thomas. (It's a great song)
At this point, Raquel will play "Pieces" as a duet with Emily. We will have to figure out an arrangement. I was told they had a sleepover together that night after the lesson, and they were at Raquel's keyboard for hours. I can't begin to tell you how rewarding that is to me.
Here are two videos with a bunch of clips from the lesson.
4-17-17 My experience with Raquel so far.
Raquel has Wolfram Syndrome, an insidious, horrible disease that is quickly taking away her eyesight. It will eventually take her hearing from her, and it will keep taking and taking from her. Wolfram patients average lifespan is 30.
When I first met he, I would never have known anything was wrong with her if Stephanie, her mom, haden't told me. She is doing very well with a few beginning pieces that I taught her. I showed her how to finger scales and she proceeded to play a scale all the way up the piano. That is very impressive from a beginning student.
Raquel is an inspiration. I am in awe of her strength. She never complains, she has a beautiful smile, and she always wants to learn more and play more. We are both dissapointed when her lesson ends.
I am so very proud to be Raquel's teacher. My student, Emily, who is Raquel's good friend, told Raquel about me and recommended me to her. Thank you, Emily!
Finally, Thanks for visiting our Townsend Music School website and finding out about music lessons. We appreciate it so much. Thank you for caring about music. And thank you for caring about Raquel.
Now, sign up for music lessons with us, watch the moving video by The Snow Foundation, and go to The Snow Foundation website!
Raquel's uncle is J. T. Snow, who was the San Franciso Giants gold glove first baseman for 13 1/2 seasons.
Raque goes to a regular school and can still get around on her own. She is in the 6th grade.
Please contact us. Our instructors are incredible. They are the most exceptional and talented staff of professionals you will find anywhere.
Trusted teachers who are fine role models.
14776 Clayton Road
Ballwin, MO 63011
and DONATE to
Also, please watch the video on our video page about Raquel, our wonderful student who is afflicted with
Please DONATE to The Snow Foundation. http://thesnowfoundation.org/donate/