Room to Breathe Foundation

So we had a meeting with our Director of Public Relations over the past few weeks we were trying to narrow down a date for this and we finally have it. Please sign the petition so we that THE VEPTR AWARENESS day becomes a nationally recognized day!! http://wh.gov/S8Cf

Only 54 more likes to reach our goal of 350!!!!!!!!!!!!!!!We had a busy week here at the foundation, focusing on ways to raise funds, and awareness. We are currently in need of someone to help assist us in updating our VEPTR Hosp DB. We have not updated it in quite some time. So we are looking with someone who has some spare time to donate to this project. We are hoping to have some exciting announcements in the upcoming weeks. Also interested in getting more VEPTR kid stories to feature on our website. If you’re interested in having your child feature please let us know.

Greetings everyone it has been a very busy weekend here in the Room to Breathe Foundation.  We have a few new volunteer staff members.  We’ve been very lucky with our interns.  Our grant research intern has been phenomenal and help us narrow down some grants we might be eligible foundation which is very exciting news.

Our new list volunteer is Jenny Hodes.  Jenny will be hosting a new Facebook group  for their Room to Breathe Foundation called the VEPTR Q&A with Jenny H.  Jenny was Dr. Campbell 17th patient in San Antonio, Texas.  Her first implant was done in 1994.  You can read her full story on our website r2foundation.org.  This group will be a close group for VEPTR parents and teens to ask questions directly to a VEPTR graduate who is now currently a college student studying to be a child life specialist.  Jenny is also open to one-on-one conversations with parents for questioning.  She is in full control of the VEPTR Q&A group.  So please feel free to join today and asked her questions.

https://www.facebook.com/groups/veptrqa

We are pleased to introduce our newest staff member.

Palma Casciato’s philosophy is that each person should strive to excel in any endeavor using a professional, enthusiastic, and ethical approach. Continuously, she strives to expand her scientific medical qualifications so to project these skills with the organization’s objectives and goals towards improving the quality of human life. Her qualifications include: i)  MS in Pharmacology and Toxicology at Michigan State University; (ii) MBA in healthcare management at Davenport University; (iii) Project Management Certificate at Humber College; (iv) Clinical Research Associate Certificate at Michener Institute; (v) Healthcare Professional Degree at University of Rome. Growing professionally assists in actively contributing to social causes. She has volunteered with Villa Colombo Home for the Aged and Canadian Heart and Stroke Foundation. Her outside interests are reading, jogging, and swimming.

Current Openings for Volunteer staff

Graphic Design Artist
Social Media Specialist
Grant Writer
Desk Reporter
Research Blogger
Project Development & Design (Fundraising Specialist)

My Story

By: Jenny Hodes

My diagnosises at birth, which led to having the VEPTRs at 18 months of age were a left congenital diaphragmatic hernia and congenital scoliosis with fused ribs causing respiratory insufficiency. Those are the problems that caused me to need the VEPTRs, but my other medical problems are restrictive lung disease- 30% lung volume/pulmonary hypertension, bilateral Duane’s syndrome, legally blind in left eye, and OCD/anxiety. From birth until now, I have had over 40 surgeries., most of which have been VEPTR procedures. It has impacted my life because it has strengthened my relationship with my family, taught me how to face things head on with determination, and made me trust in God that He has/will heal, guide, and protect me despite my circumstances. Without God providing the doctors to perform this lifesaving procedure, I would have died probably before the age of 3 or 4. I have also learned how to live life to the fullest and appreciate everything that God has given me. The negative impact of having surgeries is that I missed out on many normal childhood activities such as school, developing social skills, making friends. I also experienced bullying by peers and had a lot of anxiety/fears until sometime during high school. The VEPTRs caused me to want to become a child life specialist in a pediatric hospital so I can help children deal with medical problems effectively or teach special education students in a public school setting. As of now, I am studying elementary education and psychology at Florida Southern College. I also work at Chick Fil A whenever I am home. In the future, I hope to attend UCF so I can get a masters in early childhood education and development and work as a child life specialist or special education teacher. After that, I plan on continuing to experience all the plans that God has for me. If you want anymore information feel free to contact me. There are pictures of me from this year attached. 

Last night Robbie introduced his little sister Rachae, she too wears her medal on the inside.with the release of Rachel.we have opted. to keep the sales event prices as low as $11.50 per tee and $13.59 for mugs for an additional week…Rachael Rib awareness merchandise now available. http://www.cafepress.com/r2bfoundation2

We are proud to Announce our $14.00 Large Mugs.  They feature the same designs as our Tee Shirt sales event but on mugs.. Everyone drinks tea or coffee.. We hope you enjoy yours as much as we enjoy ours.

View our selection of coffee mugs

Product Information
Express yourself with our premium-sized ceramic coffee mug. With its large easy-to-grip handle, steady base, and hefty 15 oz. capacity, this mug allows for comfortable sipping and slosh-free use, at home or at the office. Dishwasher & microwave safe, it’s easy to clean and for reheating.

• High-Fired Ceramic
• Microwave & dishwasher safe
• Holds 15 oz.
• Dimensions: 4.5″ tall, 3.25″ diameter

Our Graphic design department has been busy. They created a mascot for the Foundation. Designed by Zoe E. Lambert we are pleased to introduce him to you today. Tee shirts, and other merchandise will be available on our cafe press store by the end of the week. You can find our store front here: http://www.cafepress.com/r2bfoundation2

Greetings everyone,

New and exciting things  are happening here at the Room to Breathe Foundation.  We are now listed on several volunteer recruitment sites.  The foundation is open Monday through Friday 9 AM to 5 PM and Saturday 10 AM to 6 PM.  A staff member is available by phone 24/7.  We also have several volunteer positions and internships available to college students if  your child or someone you know has a student in college, and is interested in getting business credit for fundraising,  graphic design, research and development and project coordination please feel free to contact us or have them submit application as soon as possible.  We are currently in search of grant and research development interns and volunteers to help us maximize our fundraising efforts.

We are also in search of corporate sponsors, and/or partners to sponsor our organization and partner up so please spread the word.  If you know of interested companies, please let us know.  With the growing today’s technology.  We are expanding our office to a virtual office.  This means we will be available online from 9 AM to 7 PM Monday through Friday and both Saturday and Sunday’s from 10 AM to 7 PM.  We will currently be using Skype as our virtual office.  For those of you are that are unfamiliar with Skype it is instant message/voice over Internet protocol system where you can type or talk to a number of individuals at the same time you can download Skype and Skype.com our Skype e-mail address is admin@r2foundation.org.

We are interested in expanding our family support system.  What this means is we would like the VEPTR families to volunteer time.  Families willing to talk to new families  coming to the VEPTR community locally within the region of whatever hospital you attend. For example as a support family  you would give a business card to your child’s Doctor for them to give to families in need of support.  We currently have three family specialists that volunteer to talk to new families. We also are looking for individuals with creative mind to help with new and innovative fundraising ideas that we can do virtually or on a local scale for VEPTR family somebody is always in the office.  If you are interested.

For those unaware our foundation runs like a small business.  We have full-time volunteer staff part-time volunteers as well as part-time volunteer and intern slots available.  Our family support system is open 24 seven.  If you need somebody to talk to feel free to call our office or are one 800-number. We know how hard it is being a parent of a VEPTR child and we are here to help you in any way we can.  First and foremost is family support systems our children have to go through so much that we cannot stress them out so we look for support ourselves.  We will also be opening up a Facebook group for VEPTR teens and children, ages 13 and older, which will be supervised by a member of our staff to protect the privacy of our children who you talk amongst themselves in question each other on how they feel and be their own support system I am aware that some parents might be conscious of this but please know it will be this under supervision by staff member and you can always come to one of our staff members and asked to see this transcript but you have to prove you are a parent of a child in the room project other children’s and  parents privacy.

With today’s social media.  We feel that is very important for these children to be able to connect to each other and share their experiences as we share our with each other will also be looking for volunteer staff member to supervise this website as well we need one or two more interested your child must be within the qualification rating age range of 13 and older, so if your VEPTR child is 13 or older and would like to participate in a R2BTeen Link support group please let them know that they can join by the following link: https://www.facebook.com/groups/504727966256258/

As many of you know we’ve started a new life after expansions group on Facebook as well.  This group is for parents of older children and older children coming out of the VEPTR program to discuss their life after Dr. the group will remain open for the time being, so members can find the group.  However, there will be a: members within the next 30 days after we reach 75 members to see if we can close the group because there are so many parents coming into the VEPTR program each year that we thought we need a separate section for support for the life after VEPTR’s.  We know how hard it is  more often than not to be on this road and you have to look at all sorts of options for our children for their after VEPTR care whether we chose choose full spinal fusions leaving in devices or many other options that will be readily available to parents life after VEPTR for many of us is a journey that many have not walked at a new be some of the first people online to experience life after VEPTR and we would like to share our experiences with you is you keep use, share your experiences with us for many the VEPTR surgery was a game changer and for many more life after VEPTR will also be a game changer because that is what life has given us.  We have the special teenagers who challenge us as teenagers, but at the same time, they challenge the medical industry itself.  Keeping all of us on our Would like to thank the VEPTR community for your love loving support for out of our foundation.  The VEPTR community is the reason we exist today to give back as VEPTR parents with the VEPTR community has given us in support emotionally are struggling in support with you know options that we needed and we are hoping to thrive as a support system for the VEPTR community itself.

We started a new Life after Expansion group.. https://www.facebook.com/groups/120403411487539/