AHA Heart Walk Tomorrow April 28
Come Join…
Mended Little Hearts of Greater Rochester at the 2012 Rochester Heart Walk
Saturday, April 28th
Rochester Blue Cross Arena at the War Memorial
Registration from 8:00 am to 10:00 am
3 Mile Walk from 10:00 am to 1:00 pm
To register for the walk with Mended Little Hearts go to the American Heart Association Heart Walk for Rochester , NY at:
www.rochesterheartwalk.org/
Questions please contact Andrea Dougherty (585)794-3087 or email at adougherty@paychex.com
Skate with Heart CANCELLED
Due to the unseasonably warm weather, the 2012 MLH Skate with Heart Party scheduled for Saturday, March 10 has been CANCELLED. We apologize for the cancellation and will schedule the event again for 2013.
We hope to see you at the American Heart Association Heart Walk April 28th. More information about joining the MLH walk team is below or contact Andrea at 794-3087 or email mags1078@hotmail.com.
Skate with Heart Rescheduled
REMINDER - the MLH Skate with Heart Party originally scheduled for today has been rescheduled for Saturday, March 10th due to the unseasonably warm weather.
MLH Volunteer / Visitor Training Dinner Feb. 7th
Mended Little Hearts will be sponsoring a Volunteer / Visitor (Coffee Hour Host) Training Dinner on Tuesday, February 7th at 6:00 at the Great Northern Pizza Company at 12 corners in Rochester. Phone number to restaurant is 244-7437.
For all those that have considered volunteering or hosting weekly coffee hours - please attend.
RSVP by Friday, February 3rd if you plan to attend to kowaljennifer@yahoo.com.
Looking forward to seeing you there.
MLH eNewsletter January 2012
Mended Little Hearts of Greater Rochester is looking forward to making 2012 another great year! Our mission this year is simple: support as many families as possible!
What do we do?
Mended Little Hearts provides families and caregivers of children with heart defects and heart disease an outlet through which they can find answers, education, resources and access community-based peer support – building hope for the future. With Mended Little Hearts, children with congenital heart defects (CHD) and their families find strength and understanding from those who share the same experience.
The Facts about CHD are a good reminder to why MLH is so important:
- Congenital heart defects are the most common birth defect in the United States occurring in nearly 1% of births
- There are approximately two to three million individuals in the United States with congenital heart defects. Because there is no U.S. system to track congenital heart defects beyond early childhood, more precise estimates are not available.
- Thanks to improvements in survival, the number of adults living with congenital heart defects is increasing to about 85%.
- Most causes of congenital heart defects are unknown.
In 2009 the hospital costs for children with congenital heart defects was nearly $1.5 billion.
MLH National News:
New Campaign I See Red! - We are excited to announce our new National Campaign – I See Red. You will see the new brochures, posters and messages in 2012.
When I see red...I see CHD (Congenital Heart Disease) as the #1 birth defect.
When I see red...I see the lifesaving blood given to CHD patients in surgery.
When I see red...I see a lifelong disease that is severely under-funded.
When you see red...THINK of the 1.8 million people living with CHD in the United States.
When you see red...SHARE what you know about CHD with others.
When you see red...ACT and locate a Mended Little Hearts group near you so you can bring CHD awareness to your community.
New Website: www.mendedlittlehearts.org has a new website. It is packed with all kinds of important information for new families as well as members. Visit our new, improved website! Some of the things are:
- Discussion groups for parents, grandparents and teens
- CHD Awareness Resources
- How you can help MLH
- Shop National MLH gear
- And more!
Lobby Day – March 1st: Thanks to the many advocates, 2011 has proven to be another incredible year in Congress for congenital heart disease (CHD). Yearlong efforts were realized with first-time funding for the Congenital Heart Futures Act. For FY2012, $2 million was appropriated to the Centers for Disease Control and Prevention (CDC) specifically to be applied to better understanding of CHD across the lifespan. Our goal for Congenital Heart Lobby Day on March 1st 2012 is to meet with our legislators and celebrate this success. However, we realize this is only the beginning. We need to motivate our members of Congress to learn more and do more. All are welcome. For more information email kowaljennifer@yahoo.com
Submit Video of ‘Life with CHD’: MLH National is looking for creative videos about Life with CHD. Create a 2 minutes video of life and submit to National. 2-3 videos will be selected from those submitted to be used in future campaigns. Contact me for more information.
Local News:
Democrat and Chronicle: If you did not get a chance to read the Our Towns in the Democrat and Chronicle last week, Mended Little Hearts and the Kowal Family were featured in the January 4th article. Click on the link to read the article:
http://www.democratandchronicle.com/article/20120106/NEWS05/201060323/Heartfelt-help-worried-parents
New MLH Rochester Website: We are working on a new website as well thanks to Sam Sherman – a local adult CHD survivor. We will have a new web address and a look that integrates the I See Red! Campaign as well. We hope to release the new site just in time for CHD Awareness Week February 7-14.
Local Events:
The American Heart Association’s Heart Ball
Date: Saturday, February 4th, 2012
Time: 6:00 pm
Where: Rochester Plaza Hotel
Cost: Tickets $300 per person
Every sponsorship dollar given goes to CHD research. Email kowaljennifer@yahoo.com to receive full invitation via email.
Congenital Heart Defect (CHD) Awareness Week Activities
Date: February 7th – 14th
- Have your Town or Village officially declare the week CHD Awareness Week. Present the proclamation at your Village or Town Board Meetings.
- Buy or Sell chocolate heart shaped lollipops to friends and family for $1.
- Wear RED! Simply wear red during the week and pass out flyers making friends, family, coworkers and strangers aware of CHD.
- Register with MLH – if you have not done so please officially register with MLH on the national website.
MLH Skate with Heart
Date: Saturday, February 11th *
Time: 1:00 – 3:00
Where: 200 Maple Avenue, Victor
Cost: FREE
RSVP: 585-398-7112 / kowaljennifer@yahoo.com by 2/7/12
Celebrate CHD Awareness Week with a fun afternoon of skating and hockey on a backyard rink. Hot chocolate and snacks provided. Don’t worry if you don’t skate…. boots on the ice are good too. All ages and levels are welcome. Helmets are required for kids. *Snow Date: Saturday, February 18th.
American Heart Association Heart Walk
Date: Saturday, April 28th
Stroll for Strong Kids
Date: Saturday, June 2nd
2nd Annual ‘Hearts Go Wild’ Summer Picnic
Date: Saturday, August 4th of 2012
Where: Seneca Park Zoo in Rochester
Other Events / Topics:
Cath Lab Tour with Dr. Miga: we are looking to have a Cath Lab Tour and Presentation by Dr. Miga later this spring. More details to come. This exciting, rare opportunity will only be made available once. So please register early – you don’t want to miss this event.
Monthly Parking Passes:
Parking Facts – Golisano Children’s Hospital at Strong:
$6 per day per car x 2 cars = $12 per day
30 days per month x $12 day = $360 per family
Approximately 325 children have heart surgery each year at GCHS!!!
For just $35, you or someone you know in your community can purchase a monthly parking pass which allows unlimited ins / outs for up to two cars and alleviate the parking fees for a heart child’s family. On average, children undergoing heart surgery are estimated to stay in the hospital anywhere from 2 – 4 weeks. Parking is an additional expense and stress on families. However, by donating a monthly parking pass, you are greatly helping a family. And remember, your donation is tax-deductible.
MLH Volunteers: We are still looking for local volunteers for the following positions / programs:
- Grants Coordinator – researching and applying for grants to help us fund more projects and activities (like the Summer picnic).
- Coffee Hour Host – host coffee hour on Wednesday from 3-4 at the hospital. Meet families in crisis mode and let them know that they are not alone…..you have been there too!
- Walk Coordinator – spearhead the AHA Heart Walk in April and / or the Stroll for Strong in June.
- Educational Events Coordinator – coordinate informative, educational events for our members. Some ideas: Fire Station Tour, Stress Relief Workshop, Cooking Classes for Heart Healthy Living, CPR Training, etc.
- Holiday Events Coordinator – making sure holidays are made special for the families in the hospital. Some ideas: Mother’s Day Cards and Breakfast, Easter Books, Birthday Cards to kids, Mendiversary Cards to Kids, Angeliversary Cards to Family, etc.
- Fundraiser Coordinator – someone willing to put together a fundraiser event(s) or drives for awareness and funding.
- Ronald McDonald House Liaison – look for ways to better comfort our families during their stay at the RMH. Help with programs at the RMH to better assist all families in crisis.
- Donate your services – photographers, website designers, painters, sewers, musicians, entertainers, athlete – whatever your talent is….we can use it! MLH can use your talent to help raise money and awareness. If you have a unique talent – let us know.
As we approach MLH of Greater Rochester’s 2-year anniversary, we have come so far. However, there is still so much more we can do. If you have ideas on how to better support our families in and out of the hospital, how to spread CHD Awareness or ideas for events – don’t be shy. Let us know! We are always brainstorming and eager to put in motion new programs.
((((HEART HUGS))))
Jennifer
MLH Skate with Heart 2012
MLH Skate with Heart
Date: Saturday, February 11th, 2012*
Time: 1:00 – 3:00 pm
Where: MLH HQs, 200 Maple Avenue, Victor
RSVP: 585-398-7112 or via email to kowaljennifer@yahoo.com by 2/7/12
Join MLH members and supporters in a fun afternoon of skating and hockey on a backyard rink. Hot chocolate and snacks provided.
Don’t worry if you don’t skate…. boots on the ice are good too. All ages and levels are welcome. Helmets are required for kids.
*Snow Date: Saturday, February 18th
Attachments:
Thank you Saints and Sinners
Want to send a big thank you out to 'Saints and Sinners' of Rochester for their generous donation to Mended Little Hearts. Their mission is to provide funding to charities in the Rochester area. Since its inception, the organization has given more than $700,000 to local charitable organizations. For more information about Saints and Sinners, go to http://sandscharities.org/
Make Holiday Cards for Patients
Making or signing holiday cards for heart kids and their families in the hospital this holiday season is a great, rewarding way to make a difference. Just send your signed holiday cards to MLH of Greater Rochester, 200 Maple Avenue, Victor, NY 14564. We will be distributing the cards at the hospital on December 21st. Thank you again for making 2011 an amazing year!
Pediatric Cardiology Fall Speaker Series Presented by Mended Little Hearts of Greater Rochester
Pediatric Cardiology Fall Speaker Series Presented by Mended Little Hearts of Greater Rochester
We have a very exciting ‘Fall Speaker Series’. The Speaker Series is meant to bring the doctors and surgeons expertise up close and personal to us. Many of us know these people quite well, but we know them because we see them in and out of our child’s room when in crisis mode. These events will bring them to us where we can think and process what they are saying in a learning, educational environment.
Dr. George Alfieris
Wednesday, October 26th at 6:00pm ‘Congenital Heart Defects: An expert surgeon's experience’
Dr. Roger Vermilion
Monday, November 14th at 6:00pm ‘The Children’s Heart Center and In-Patient Update’
The events are free and will be held at the LeChase Room at the University of Rochester Medical Center. Please use the Kornberg parking lot (first light to the west of the main hospital entrance, small parking fee), and enter through the School of Medicine & Dentistry.
Please RSVP to Jennifer Kowal at kowaljennifer@yahoo.com or by calling 585-398-7112. Light appetizers will be served.
Thank you for coming to the Zoo!
We want to say 'THANK YOU!' for coming to the zoo on Saturday evening. We had a fabulous turnout - 274 people attended! That is incredible for a 1st Annual Event. Friends, Family, 52 Heart Kids and Hospital Staff were able to share in this experience.
We certainly hope you had a good time and look forward to next year's event. If you have suggestions on how to make it more memorable or would like to volunteer, please contact Jennifer. It is never to early to start planning.
Pictures will be available soon. Again, we want to thank you for making this year's event so special. ((((HEART HUGS))))
Zoo Picnic Donations
What type of silent auction items are you looking for?
Hotel Available Night of the Zoo Picnic
I
f you are traveling from outside the Rochester area, there is hotel availability at the RIT Conference Center the night of the Zoo Picnic. To reserve a room, call Strong Hospital Guest Services at (585) 275-7581 and explain you are coming for the MLH picnic at the Zoo. The guest service rate is $40/night plus tax.
Hope this makes it more convenient for you and yourr family to attend the picnic. If you have any questions, please call Jennifer Giblin Tillou, Pediatric Cardiology Social Worker at The Children's Heart Center at URMC - (585) 275-3584.
REGISTER NOW FOR THE ZOO!
Saturday, August 6th from 5-9 at the Seneca Park Zoo
Join other heart families from across Upstate NY and all those that support them at the Seneca Park Zoo for an evening of fun and friends. Please join us at this fun, exciting event.
There are also sponsorship opportunities available: sponsor a family to attend, donate silent auction items, donate to the general zoo picnic fund, or volunteer services.
If you have questions, please don't hesitate to contact Jennifer Kowal at 585-398-7112.
Attachments:
SAVE THE DATE: August 6th 5 - 9pm
SAVE THE DATE: Mended Little Hearts of Greater Rochester is partnering with The Children’s Heart Center at the URMC for an evening at the Seneca Park Zoo to celebrate heart families and all those that care for them. Saturday, August 6th from 5 - 9. Stay tuned for more information.
Looking for Volunteers for Coffee Hour
MLH is looking for volunteers to help host the weekly coffee hour at the hospital on Wednesdays from 3:00-4:00. Everything is supplied for you - we are looking for a MLH member to listen, talk and offer hope to families. If you are interested, call 585-398-7112 or email kowaljennifer@yahoo.com to get more details about how you can volunteer.
Tomorrow Night MLH Meeting
Reminder: May 17, 2011 (Tue), 6:30pm to 8:00pm
Lifetime Care Building, Education Room
3111 S. Winton Rd, Rochester NY
[Map]Notes: Please join us and meet other CHD families in our community. We will also discuss ways volunteers can help MLH and what our community hopes to gain from MLH.
Mended Little Hearts March 2011 eNewsletter
Please find attached the latest MLH of Greater Rochester eNewsletter.
Attachments:
MLH Featured on 13Wham-TV Morning News
Little Claire Elizabeth Kowal, a pediatric cardiac patient at Golisano Children's Hospital, was on the 13WHAM-TV morning show today with her mom Jennifer. They've started a local support group called Mended Little Hearts for parents of children with heart issues.
http://www.13wham.com/content/news/thismorning/story/Thursday-on-13WHAM-News-This-Morning-Mended/UNTrBFOKN0a_7YAfsL3n6w.cspx
Skate with Heart
Skate with Heart
Date: Saturday, February 12th, 2011
Time: 1:00 – 3:00 pm
Where: MLH HQs, 200 Maple Avenue, Victor
RSVP: 585-398-7112 or via email kowaljennifer@yahoo.com
Join MLH members and supporters in a fun afternoon of skating and hockey on a backyard rink. Hot chocolate and snacks provided. Helmets are required for kids while they are on the ice.
Attachments:
January / February Mended Hearts Newsletter
AHA Research Reception - December 9th 5:30 - 7:30
The AHA is having their Researcher Reception on Thursday, December 9th, 5:30-7:30 at Max at High Falls, 60 Browns Race. They will be serving hors d'oeuvres and cocktails.
The featured speaker will be Dr. George Porter, Ass't Professor at URMC, division of pediatric cardiology. He will be speaking on: Understanding the Origins of Congenital Heart Disease: Bioenergetics.
Please RSVP to me by Friday, December 3rd. This event is FREE!
Monthly Parking Pass Campaign
Parking Facts – Golisano Children’s Hospital at Strong:
$6 per day per car x 2 cars = $12 per day
30 days per month x $12 day = $360 per family
Approximately 225 children have heart surgery each
year at GCHS!!!
For just $35, you can purchase a monthly parking pass which allows unlimited in /outs for up to 2 cars and alleviate the parking fees for a heart child’s family. On average, children undergoing heart surgery are estimated to stay in the hospital anywhere from 2 – 4 weeks. Parking is an additional expense and stress on families. However, by donating a monthly parking pass, you are greatly helping a family. And remember, your donation is tax-deductible.
Most people don’t realize that congenital heart defects are the most common birth defects in the United States, affecting approximately 9 in every 1000 babies. Currently, there are up to 1.3 million people living with congenital heart defects. Although cardiovascular disease is the number two killer of children under the age of fifteen in the United States (According to the American Heart Association), treatment is improving for this chronic condition, which creates a lifelong need for help and support. Mended Little Hearts groups provide that support.
For more information:
Website: www.mlhrochesterny.shutterfly.com
Phone: 585-398-7112
Email: kowaljennifer@yahoo.com
Attachments:
FREE CPR, AED Training for MLH Members
Mended Little Hearts of Greater Rochester in partnership with the Henrietta Volunteer Ambulance is offering FREE CPR, AED (automatic external defibrillator) training to its members.
The 3 ½ hour Heartsaver AED class is offered in conjunction with the American Heart Association at the Henrietta Ambulance’s Training Center, 280 Calkins Road on Friday, November 12th at 6:30pm.
Please join us for this important lifesaving training and meet other MLH members in a private setting. And because this class is only for MLH members, you will be able to ask the EMTs specific questions related to our heart kids and their conditions.
Food and drinks will be provided.
To learn more or to register, call Heather Hare at (585) 729-4005 or email harehr@yahoo.com. Please register by November 5th – space is limited.
Mended Little Hearts is a nonprofit organization that provides hope, caring and support to families who have children with Congenital Heart Defects (CHD) and heart disease. To become a member, go to www.mendedlittlehearts.org and register. Be sure to select MLH of Greater Rochester (NY) as the Group.
Please come to the September 21st Strategy Meeting
Hope you and your families had a wonderful summer. I am writing to you because you are the core group that has been instrumental in supporting MLH and getting us up and running. I ask you all to come to September's meeting for it will be a strategy / business meeting. There are several things I would like you and your families to think about before the next meeting.
The first: fundraising ideas and ways we can generate awareness and funds. I envision MLH of Greater Rochester having one main fundraising event a year and one main social event a year.
The fundraising event could be a golf tournament, wine tasting / auction event, an awareness walk, miniature golf event, etc. If you could suggest some venues where you have attend fundraising events and if you know of contacts, please bring them with you. We can brainstorm together as a group and then decide. For timing purposes, I think having the event in late spring would give us plenty of time to advertise, get sponsors and plan.
For the social event this could be a picnic, carnival, Red Wings (or any other local team) game, etc. This could would be for all our members or anyone who supports MLH. The goal here would be to have fun with our members and families.
Keep in mind, we are also going to do some other annual events again such as 'Stroll for Strong' and the AHA Heart Walk. When thinking about the fundraising and social events, we need to take into consideration time of year and other events in the area so we can have good participation.
Another thing I would like you to all think about is speaker and meeting topics. In working with other MLH groups around the country having a good speaker and specialized topics tends to bring people to the meetings. This will help our membership grow and help us reach other CHD families.
Some topics we have been working on are EMT's coming to the meetings to talk about child safety, PICU Nurse Appreciation Coffee Hour, Surgery Preparedness with PICU Doctors, etc. Any topics that you feel would be a value to members and potential members, please bring those ideas too. I would like to publish in advance monthly meeting topics so families can plan accordingly.
And finally, I would like generate a list of needs for MLH. We can start this list in September and this list can be dynamic. This list will provide those who want to donate and fundraise on their own an idea of what items or services MLH needs. This list can be published on our website and can be handed out. There are some cardiac staff on the email and I know they have some wonderful ideas.
Again, our meetings are open to everyone and anyone who wants to make a difference with heart families. I encourage you all to come and bring your ideas.
Place: Lifetime Care Building, Education Room A, 3111 N. Winton Road, Rochester
Last Man Standing Football Pool to benefit MLH
It is a great honor to announce 'Last Man Standing Football Pool' sponsored by Phocus on Philanthropy. Every year Phocus on Philanthropy selects a local non-profit to raise money for and this year they selected Mended Little Hearts of Greater Rochester.
Rick Cognata, a Phocus Board Member, is directly affected by CHD and has been active with MLH. His daughter, Brittney, a high school student at Fairport has undergone several open heart surgeries and is doing very well. We thank Rick and Phocus on Philanthropy for supporting MLH. We are so very grateful.
Type in “Phocus” and then “Vikings for the password and that’s all !!!
To play: Pick one team each week to win. Only catch is that you cant pick the same team twice. Don’t forget to pick though or you’re out! The site will track your picks and everyone else’s for you.
A $20.00 entry fee may be made to any board member or send a check to: Phocus on Philanthropy, 111 Parce Avenue, Fairport, New York 14450. Please indicate that you are a MLH member.
Good luck to all that participate and if you know of any family members, friends or co-workers who would like to participate, please feel free to pass on the information.
For more information, please feel free to contact Jennifer Kowal at 398-7112 or via email kowaljennifer@yahoo.com
July and August's Meetings Cancelled
After speaking with several families and about their summer plans, it seems as though the summer might be a tough time to hold meetings. Therefore we are going to cancel July and August's meeting and resume in September.
Don't be fooled, just because we are not meeting as a group does not mean that we stop supporting and getting involved with heart families. If you would like to volunteer or meet other heart families, you can reach me at 585-398-7112 or via email kowaljennifer@yahoo.com.
Park Middle School - Thank you
A big thank you to Evelyn and Murdhula of Park Middle School in Scotch Plains, NJ. For their Service Learning Project, they chose to research Congenital Heart Defects and how it effects children. They presented their findings to their class this past week and raised $130. They donated it to the MLH of Greater Rochester Chapter. With their donation, we were able to purchase a loaner infant car seat for the Cardiac PICU.
Many times, babies come to the hospital via ambulance or other means or the family does not have a car. When they are discharged, the family may not have a car seat to take the infant home. All children must be strapped in a proper car seat while riding in a car and many taxis do not have car seats for families to use.
The infant car seat enables families to safely take their children home. Again, a big thank you for the considerate donation and helping us raise awareness about CHD to Evelyn, Murdhula and their families. We sincerely appreciate it.
In meeting with Jennifer GIblin, Social Worker Pediatric Cardiology, and asking what does the Cardiac PICU need - an infant car seat was on the top of the list. Donations from individuals or groups will go directly to helping the pediatric cardiology department. This is a very unique opportunity to help our families in need and to give back to our community. See your donation in the works - ask how you can help!
Stroll for Strong 2010
Stroll for Strong was a great success. Thank you to all those that came out to support Mended
Little Hearts and Golisano Children's Hospital. DJ Julie and Joe, the production guy from 100.5 The Drive were more than kind to let us share their tent just in case it rained.
Lots of people stopped by our booth wanting to know how they can help. All in all, we had a great day. After the walk, the kids had a great time in the jump houses, dunkin' doctors in the dunk tank and dancing to music.
If you have photos from the event, please post them for all to see. Again, thank you for coming out and supporting MLH and the hospital. We were able to surpass our Team Goal of $1000.
Back from MLH Leadership Conference
I just got back from a fabulous weekend in Minneapolis. We learned and met with all the MLH Chapters from around the country. It was very informative and exciting. I will have a full report later this week.
Pump up the Volume
Next Saturday, May 15th from 4pm - 7pm we will have our first Family Night - 'Pump up the Volume'. This will be a very fun event for everyone in the family. There will be pizza, drinks, music, art and more.
This is a great opportunity to meet other 'heart' families in a friendly, fun atmosphere. If you are interested in coming, please RSVP so we know how much food to order.
Child Life Specialists from Strong Hospital will be attending the event. They, along with Social Workers from the pediatric cardiology department, will be on hand to talk to children and parents about any anxieties or questions they may have.
RSVP to 585-398-7112 or kowaljennifer@yahoo.com. Hope to see you and your family there.
To become a member, click the link below (or copy into a new web browser) and click on 'how to become a member' on the left hand side. Be sure to select 'MLH of Greater Rochester (NY)' as the Group. PLEASE NOTE: By clicking on the link below, you will be redirected to another site.
To register as a supporter, use 'Supporter' for Patient's Name and 'N/A' for the DOB. For questions, please call 585-398-7112.
