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Latest Activity: Feb 13, 2017


Any Families Near Springfield MA?

Started by Christine Piacentino Aug 6, 2010. 0 Replies

Fund-Raiser in the Seacoast Area

Started by Linda Currier. Last reply by Joanne Haswell Oct 3, 2009. 3 Replies

Boston Area Families interest in a "play group."

Started by Anne Hancock. Last reply by Anne Hancock May 22, 2009. 2 Replies

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Comment by Joanne Keeley on October 4, 2008 at 11:53am
Hi All,
3 Joannes, yikes! Okay then, Joanne W~ I am working on the gogo with the customized seat with Elise Townsend at Mass General. The fellow who developed the seating with Laura Case has been contacted and she found someone in Connecticut to work with him! exciting.
I have had lots of people offering to do the ramping needed in my house (right at the entrance into the house, of course!) It's done in such a way that people scratch their heads when they see it- 5 steps in 5 different sizes. Hard to explain. Anyway, I would rather see you donate it and move ahead with the scooter at this point. I appreciate so much that you still have it for us but I'm really focused on the Go-Go right now.
Thanks for keeping us all updated on Adam. I hope that he settles into the
clinical and that all goes very well!!
I think that it's a great idea for us all to share our experiences with the doctors and any suggestions. So important...
Comment by Joanne Wechlser on October 4, 2008 at 7:27am
HI there, There are three Joanne's in this group and we all spell it the same. What are the chances?
I'm enjoying this conversation and will put in what we do and know. We see Dr. Finkel in Philly because of my son's stop codon. He was in 2a two years ago (prior to Tsengs clinic) and we will be starting up again next week. This past week we were in Gainesville doing the MRI study. Rafael, if you do consider moving, both Mass and NJ have a fund called the Childhood Catastrophic Illness Fund. If we were to move closer to Philly, I would choose southern jersey for this reason. You can google it. Pays for vans, home modifications, equipment, etc. Beside the summer conference, there is also a Washington DC Legislative Advocacy Conference that is very fun. I'm not good at fundraising, but when I go to DC, I feel like I'm contributing in a big way. JoanneK, I have the stroller in my garage and finally got my new one. Any chance you'll be up this way? I'm also thinking I can ship it. Or, I have friends coming up here next weekend who can bring it down closer to your way. The choices are Dover, VT, Amherst MA, or Pearl River, NY. Would either of these make pick up easier? Let me know if you're still interested. If anyone wants to follow our journey through the clinical trials, I started this webpage.
Comment by Joanne Keeley on October 3, 2008 at 9:16pm
Hi Everyone,
Wyatt went through the clinic in Mass General in April and we will be returning with Wyatt in November. I live in Connecticut and it is about 2 hrs. to get there with a little boy who has always had issues with travel. We drove to Cincinnati and had wonderful treatment with Dr. Wong and her staff, but with my concerns about travel, 14 hrs is a long way away from 2 hours!! I also spoke with Dr. Brian (Tseng) and Christine McSherry about the clinic being concerned with the fact that it was just on it's way to opening... Christine has been through the same things we all have been through- searching for doctors with enough knowledge about dmd to treat our boys and enough interest to have up to the minute information.
I was scattered all over the place with doctors in NY and CT was not any easier. I was very happy with Brenda and still keep in touch with her. I saw her at the Philly conference and she was very interested in Wyatt, had no issue with my move to Mass General - only wanted the records to keep herself in the loop on his case and I will have them sent to her.
Wyatt is crazy about Dr. Brian and was checked by Pulmonary, Cardiology, Endocrinology, Physical therapists, etc. I feel very secure and comfortable with Dr. Brian's treatment. I can call with one question or 10- I always get an expert answer.
I hope to make their next roundtable on November 1 and it would be great to see some of you guys there!
Comment by Rafael on October 2, 2008 at 5:49pm
Thanks for the quick reply. I will look into Jett later on tonight.
Comment by Eileen DeLong on October 2, 2008 at 3:36pm
The Jett Foundation was created by a Mom with a boy with DMD. She also happens to be a nurse. She wanted to create an New England based organization to raise awareness of DMD with the purpose of appropriating funds for research that will realize a cure for the disease and ensure that stricken children will have the opportunity of a lifetime. She was not happy with the care offered locally and took it as her life mission to improve care for our boys.
Check out her web site for more info:
Comment by Rafael on October 2, 2008 at 3:14pm
Hello all,
I will attach a photo once I get home, My wife and I are relatively new to everything. We currently take Ellijah to Hartford's Childrens Hospital, but in the next few years I want to move closer to either Boston or Philly because I have been told that those are better hospitals for Ellijah. We want to help with research, but we dont want Ellijah being prodded. What is the Jett Foundation? and what occurs at these conventions?
Comment by Eileen DeLong on October 1, 2008 at 9:01am
I did not go to the conference but I really want to go to the next one.
We see Dr. Wong right now. She is really great. We did start out at Boston Children's with Dr.Kang who is really nice. But they were not very helpful. How is Dr.Tseng? I hear really good things about him. We may go to him for our 6 month visits inbetween Dr. Wong. Going out to OH is a lot of work. I have 2 boys with 2 different Dads so it is like a three ring circus. I am sure Dr.Tseng is good because it was Christine McSherry who lured him out here. She runs the Jett Foundation and is my sister in laws neighbor. She is amazing.
Comment by cindy q on September 30, 2008 at 9:08pm
Hi all,
I'm from MA. I was at the Philly conference. I met Joanne W. on the shuttle to the hotel from the airport. We just started seeing Dr. Tseng at MGH. My son is 6 (7 in Nov.) . Deletion 45-52 out of frame.
Take care,
Comment by Joanne Keeley on September 30, 2008 at 6:07pm
Hi Eileen and Hi Joanne!
Eileen, were you at the Philly conference? I'll have to visit your page... Do you bring your son to Dr. Tseng (Mass General) or Dr. Wong or Finkel?
Talk to you guys soon!
Comment by Joanne Wechlser on September 29, 2008 at 5:08pm
Hi Eileen,
Thanks for starting. Like the photo. We'll have to invite people to join.

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