My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.
Please let us know if you would be willing to speak with one of my colleagues or I in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.
Please let me know if we can contact you at your convenience.
Thank you for your time and cooperation in this effort.
Hi Anita! I don't know how I got to your page but I'm so glad I did!! I love the photos of your grandchildren although I'm not sure about the dates.
Haven't connected as yet with local grandmoms but won't give up. Am managing to help take care of children once a week. Thank you again for spending phone time with me--it means so much to me and gives me fuel to carry on! Best, Judie
Thank you for the compliment. Yes, PG&E is a good company to work for and does a great job getting support from our employees to help charities. We are at the tailend of our "Campaign for the Community" and I hope to see support for PPMD. I go out and talk about PPMD to try to get employee's to support them.
I am so impressed and amazed at your dedication as well. You do a great job promoting Coach for a Cure and other things. It is really special with family members, especially grandparents jump in and help. Thank you for all you do!
I am so sorry to hear of your knee. I hope you recover quickly and painless. We are doing well. Nick started his senior year so we are still doing things to get him settled in. He started last Monday. Things will settle soon I hope.
The Coach for a Cure is a big event and I hope brings lots of needed dollars. I hope to help with that as well.
I hope your grandson is doing well. He is very lucky to have you in his life. He is in good hands and has such a great family.
Thank you for your kind words. I understand not being able to write and I appreciate you taking time to do so now. It means so much to me that you would pray for our family. Kenny was a remarkable young man and brought us so much joy. He is missed every single day and still is able to bring us joy when we talk about him. We are such better people having had him in our lives. His goodness just blows us away. Thank you for looking through his pictures it brings me joy to know he's being remembered.
Your Grandson is just beautiful! You enjoy every moment and don't let DMD spoil the beauty of each day. My prayers continue to go out for all these boys, our battle is not over. God Bless you and thanks again for writting me.
Thanks for writing to me. Yes, Grant has wonderful parents. You must have been stationed at the Air Force base, which was devastated by Hurricane Andrew. Keep me posted on advice for our little boys. I want to do as much as I can for our kids and to help raise awareness and funds to keep the research going for a treatment or cure for our precious ones. I will keep Nicholas in my prayers. Harriet
It was our pleasure! I was impressed how the boys were playing! as if they had known for ages!!. Nicholas in fact slept in Mateo's room one night! (Diego is spoiled, he sleeps with me!). Nicholas is lucky on having such a great Grandma!
It was nice to meet you and Erin as well. You are a wonderful and loving Grandma and Mother-in law to be so involved. Educating yourself about this disease will be so helpful for your family in the many years to come. I hope to see Erin in Cincinnati. I just posted a comment on her page to ask her again where she is staying. Ben and I are staying at the Hyatt, July 6-July 10th.
Have a safe and happy 4th of July! Debbie
What a joy meeting you. You are a very special Grandma to Nicholas I can tell. We will manage this disease like diabetes I feel this in my heart. God Bless you & keep supporting Erin, your son & grandbabies.... We's be lost w/o our Grammies:) xoxox
It was also good seeing you and Erin. We had a good trip back home. I thought the conference was very encouraging. I will let you know when that new grandbaby arrives. Hope to see or talk with you soon.
my e mail is firstname.lastname@example.org. thank you so much for your kind words. i was also wondering if you could recomend what vitamins or supplements would be good for Juan. i am waiting for the appointment with dr.Brenda for more informatation as well. best wishes with everything.
Thank you for your post. I am a working mom but try and stay up on research through google alerts and reading the PPMD site. Often, those research articles can be overwhelming to understand. But, I try and chip away at it.
We loved participating in Coach for a Cure. It was heart warming to meet all the families and we all share a special bond. I have emailed James Poysky about our son, Will, as he has some behavior things going on. He has been so kind to try and share his knowledge with us.
I will keep Nicolas in my thoughts and prayers. I sure hope that something is discovered soon. We go to Dr. Wong in Cincinnati and I have been trying to have Will qualify for growth hormone therapy - it has some way of slowing down the leakage of the muscle cells. It's quite expensive and in order for your insurance to pay for it, the patient has to be so many stnd deviations below the growth curve. I was told maybe next year. In the meantime, Will is on deflazacort which is a steroid...which I think really helps but admittedly has some effects.
I must stop and get ready for my work day. The best to you and your family.
To be continued,
I'm sorry I was unable to attend the tailgate party at LSU. We had all intentions to attend (even had shirts made) but Riley caught a stomach virus and was really sick. He had come to sleep at my house on the Friday night. He told my husband that he didn't feel well and laid on the couch. I noticed that he fell asleep so I went to pick him up to carry him in his bed when he sat up and began throwing up. It really scared me because I had never seen anyone throw up so much and so violently. I called Rhi and Ray and they brought him home. He was still sick on Saturday, Rhi got sick on Sunday, Reagan on Monday, and Ray on Wednesday. My other daughter and husband had it several days later. I really wish we could have met but I am sure that we will be able to get together for another event. I hope you all had a good time!
I didn't comment as Pat chimed in and gave more info than Dr. Wong had. She said that she knew of this group, but that was about it. She kept the article to look over, but really didn't know much! Sorry!!
Have a great Thanksgiving!
Thank you for your message. The Poyskys are a very sweet family. We count them among our friends too. Sam had fun making his Sam's Day promo and even did it for the morning announcements at his school today. We would love to meet you and have you come to Sam's Day next year. It is a fun day! Good luck on your trip to LA this weekend. My sister-in-law went to LSU. Go Tigers! I know your son appreciates your support. Our boys and their families need all of the support they can get. Hope the Tigers do well this weekend.
We need more with the positive energy like you. Some have other battles to take on and for many other reasons may not be able to take on the advaocay efforts. Bless their hearts.for caring for our children with dmd. So, those who can forge ahead we must have our voices heard to help make a difference. We are making a difference. PPMD started in 1994 and just keeps growing stronger every year. I do believe there is hope and things will and are changing. Keep up the great work you are doing. Yes, the Coach for a Cure is such a wonderful opportunity for us!
I hope to see you in DC or just meet you.
All the best to you and your family, we will make a difference for your Nicholas and all!
I ran across your posting on one of the Coach for A Cure msgs. I love when grandparents, aunts,uncles and so on are involved to help. The positive energy, prayer and determination is what it is going to take to change the course of dmd....and it is changing.