Organizing your records:
Does your child have an IEP? Get a sturdy 2-3 inch binder. This will be traveling with you for many years to all your meetings.
- IEP/504 (include all 504 plans or IEPs and amendments)
- IEP progress notes (YOU MUST RECEIVE THESE EVERYTIME A "REGULAR ED" REPORT CARD COMES HOME - even if it takes another two weeks or so.) If you receive three report cards, you receive 3 progress notes with details about how your child has progressed on IEP goals.); IEP written notices, also called "prior written notice" even when written after a meeting (These are the school's meetings notes. Include your OWN meeting notes in this section. Legally, you are allowed to bring anyone to an IEP)
- Special education evaluations and reports (include any private evals or medical reports, if that applies)
- Standardized Assessments (include any state assessments-in MAINE: NWEA, NECAP, STAR, Acuplacer-high school-PSAT, SAT; School Report Cards (include high school transcripts)
- Home/school communication (either log time, date, content of calls or copies of emails pertaining to services, grades, IEP)
- Timeline: each year document concerns about school work and staff interaction/student placement. You can't predict when you needs this, so do it proactively. It can be helpful in Annual IEP or 504 plan review when you are asked to document parent concerns IN THE IEP or verbally at a 504 review meeting.
- ALSO PRINT OFF A FEW CLOVES FACT SHEETS TO HAVE HANDY AT MEETINGS FOR NEW STAFF.
IEP EXPLAINED (the form):
Executive Functioning information:
Laws to keep in mind: ADA (504), IDEA (IEP), FAPE (Free Appropriate Public Education)
And resources to guide you at meeting time:
- Evaluations http://adayinourshoes.com/iep-evaluations/
- Parent Input http://adayinourshoes.com/creating-vision-statement-childs-iep/
- Documentation http://adayinourshoes.com/iep-prior-written-notice-pwn/
- Legal help http://adayinourshoes.com/wrightslaw-iep-special-education/
Peace, Love, Heal - A blog about living with CLOVES
The Shoe that Grows - The Shoe that grows expands five sizes and lasts for years
Billy Footwear - Fashion and Function forward shoes for everyone
Video about Croc Modification - Created by parents of a child with CLOVES
Croc shoe modification plan - From the Proteus Syndrome Foundation's website. Many people say this process works well
Complex Child E-Magazine - Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities
Providers who can assist with Air Travel - Private and commercial providers who may be able to get you/your child to a multidisciplinary Vascular Anomalies Center, for medical treatment.
Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org
Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.
Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.
Northwest Airlines KidCares:
The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. The KidCares program is fueled by generous mileage donations of Northwest's WorldPerks members, which are then matched by Northwest. Availability of the program is based on that donated WorldPerks mileage, and consideration of each request is based on the following guidelines.
Mercy Medical Airlift: www.mercymedical.org They are associated with Angel Flight. Commercial flights.
Operation Lift Off: http://www.operationliftoff.com/Mission.html. Provide air transportation to specialized care and treatment centers.
List of multiple options: http://mercymedical.org/helpful-links/
In addition, if your child has Medicaid, some or all of their medical travel/expenses may be covered. Check with you/your child's Medicaid worker.
Angel Flight East - is a nonprofit organization that facilitates free air transportation to children and adults in need of medical treatment far from home. Volunteer pilots use their own aircraft and pay for all costs of the flight. AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations.
Companies that sell two different sizes of shoes - List of companies that provide two different shoe sizes
The Emerging Genetic Mosaic of Lymphatic & Vascular Malformations
Children's Hospital Boston discusses four syndromes with somatic PIK3ca mutations
CLOVES Syndrome at Boston Children's Hospital
Treatment and diagnostics at Boston Children's Hospital
Facilities/Physicians who treat Complex Vascular Anomaly Syndromes
List from National Organization of Vascular Anomalies (NOVA) of US providers
Children's Hospital Boston - Vascular Anomalies Center (VAC)
The Vascular Anomalies Center (VAC) at Children's Hospital Boston is a team of 25 physicians—representing 16 medical and surgical specialties—who are experts in the field of vascular anomalies
Cincinnatti Children's Hospital - Hemangioma and Vascular Malformation Clinic
Multidisciplinary treatment center for vascular anomalies
Questions to ask your Doctor
A comprehensive list of questions to ask your child's doctor/your doctor about CLOVES
Guidelines for Imaging Vascular Anomalies
Guidelines for MRI Sequences, MRI, Angiogram and Ultrasounds developed by Children's Hospital Boston
Descriptions of types of Vascular Anomalies
In depth look at capillary malformations, venous malformations, arterio-venous malformations (AVM), lymphatic malformations and mixed
Spinal Cord Anatomy/Injury -
Description and images from US National Library of Medecine
Navigating the Ecosystem of Translational Science (NETS thru Genetic Alliance)
A map and guide developed by Genetic Alliance of the drug development process
CLOVES Family Camp - Greenfield, NH
We've scheduled our 2nd Family Camp session for JULY 26-28, 2019 at Barbara C. Harris Camp and Conference Center in Greenfield, NH.
Sign up HERE to stay get information about registration once it's available. Looking forward to spending time with you lakeside this summer!
What families are saying about CLOVES Family Camp:
"The accommodations were fantastic."
"I no longer feel so alone."
"All the staff were super attentive to the needs of those who participated in camp. My son spent an unforgettable weekend. My family and I enjoyed the presence and shared experiences with others."
"This event has touched my heart and I have learned so much meeting others that are going through the same situation."
"The people were the best part."
"Zebra Crossings did a fantastic job!! They were so helpful and encouraging the entire time. I only wish we could have all stayed longer."
"I enjoyed all the activities and our group talks. I found everyone to be so helpful. It was great exchanging information from other parents. I learned a lot at camp from everyone. I truly appreciate all of them."
"I had FUN!!!!"
"Attending CLOVES Family Camp was a fun, positive, new experience for our family. It was such a special time and we look forward to doing it again."
"I loved the rock wall!"
"Very relaxing, fun times, and great memories!"
"CLOVES family camp is the perfect way to meet and get encouragement from other families. Camp is an easy way to relax, learn and grow. It’s a laid back weekend meant specifically to help families meet and share a little bit of life together."
Incredible You - A Book for Kids with CLOVES
This book was created by author Lindsay Passodelis, in collaboration with CLOVES Syndrome Community. This book is geared towards kids who are between the ages of 8 and 13 years old, and is suitable for kids with CLOVES, their friends, and family members.
In this book you will meet Kate, a ten year old with CLOVES Syndrome. You will read about Kate's medical experiences, how she talks about CLOVES, her friendships, how she copes and how she loves to have fun.
There are three ways to access this resource
1 - Suggested donation for this book is $25, to cover our costs to print and ship. If you put a check in the mail, enclose a note with how many copies of the book you would like.
If you'd like a copy and cannot afford the $25 suggested donation, please contact us at email@example.com, as a generous donor has provided us with the ability to gift a limited number of copies to people with CLOVES.
2 - You can also buy copies directly from Blurb here. This is a great option if you'd like multiple copies as we have limited printed stock in our office.
3 - Print out the PDF of this book for free.
A Resource for Kids about Segmental Overgrowth - by Segmental Overgrowth Study
Bandaides and Blackboards - This is a site dedicated to kids growing up with medical challenges
Sew Able Dolls - Unique dolls just like you! - a company that makes dolls with special needs, wheelchairs and adaptive equipment
Website about pets with special needs - A website about adopting and caring for pets with special needs
Paralyzed pets having fun - A recent CBS article on pets with special needs
CLOVES Family Assistance Guidelines/Application Process - This document explains who is eligible for assistance and the process involved in applying.
CLOVES Family Assistance Application - This document should be completed, with necessary supporting documentation, and returned via mail or email, for consideration.
Saturday June 8, 2019 is our next CLOVES Family Conference
at Boston Children's Hospital
Our 5th CLOVES Family Conference runs from 9am - 4:30pm on Saturday June 8, 2019.
Early bird registration will start on November 19, 2018. Sign up here to receive the registration details once they are available.
We will update details about the Conference on this page, as they are finalized.
REGISTER here! (coming November 19, 2018)
Learn how to sponsor our conference! (coming soon!)
Confirmed presenters for our 5th CLOVES Family Conference include:
Rick Guidotti of Positive Exposure
Rick Guidotti, an award-winning photographer, has spent the past eighteen years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual difference; his work has been published in newspapers, magazines and journals as diverse as Elle, GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine.
Rick is the founder and director of Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with genetic difference. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights.
The Positive Exposure photographic exhibition premiered at the People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History and continues to exhibit in galleries, museums and public arenas internationally. Positive Exposure is the subject of critically acclaimed Kartemquin Film’s ON BEAUTY. Positive Exposure’s powerful collection of imagery, film and narratives celebrates the richness and beauty of human diversity and dignity.
Learn more about Positive Exposure and Rick's work here.
Rick's TED Talk from 2012
Dr. Guillaume Canaud, MD, PhD of Canaud Lab at Necker Hospital
Guillaume Canaud is a MD, PhD working in the Renal Division of Necker Hospital. He did his medical school in Montpellier and moved to Paris in 2002 to perform his Residency in Nephrology (2002 to 2007). He became Senior Resident in the Renal Division of Necker (Prof. Legendre) from 2007 to 2012. Concurrently, he spent four years from to 2008 to 2012 in the laboratory of Dr. Fabiola Terzi (INSERM U1151, Necker Hospital) to achieve his PhD degree in molecular and cellular biology. Then, he joined the Joseph Bonventre’s Laboratory (Harvard Medical School, Boston, USA) from 2012 to the end of 2013 to achieve a postdoc. He came back to Christophe Legendre’s team with a Faculty position (Associate Professor) and built his own group of research dedicated to translational medicine. He obtained the highly prestigious and very competitive European Research Council starting grant (2016) for his kidney research project and an ERC Proof of Concept Grant for his translational research (2017).
Very recently, Guillaume and his group, identified and reported in Nature a very promising therapeutic for patients with a rare genetic disorder called PIK3CA-Related Overgrowth Syndrome. He published as a first or last author in top leading medical and scientific journals such as Nature, The New England Journal of Medicine, Nature Medicine, Journal of The American Society of Nephrology or Kidney International. He received several awards including the 2018 Prize Jean Lecocq of the French Academy of Sciences.
Dr. Denise Adams, MD | Boston Children's Hospital, Co-Director of the Vascular Anomalies Center
Dr. Adams is the Co-Director of the Vascular Anomalies Center at Boston Children's Hospital and is known for her exceptional care, monitoring and compassion for her very complex patients with vascular anomaly syndromes.
Dr. Adams states that "Since my first high school biology class, I have wanted to be a physician and since residency my passion has been the care of chronically ill children. In fellowship, I found a new passion and goal, to care for children and adults with vascular anomalies. This was a spectrum of diseases with limited and high morbidity that needed the care of physicians with keen interest in discovery to improve their outcome. This is my mission."
Meet Dr. Adams through her Caregiver profile at Boston Children's Hospital
"Ask the CLOVES Experts" panel
Question and answer session between families, people with CLOVES and medical providers from Boston Children's Hospital.
What kids and families are saying about the CLOVES Family Conference:
"We just wanted to say you are all some of the tallest and strongest people we have ever met and thank you for making us part of your family. We have learned so much. You all made us feel so welcome and just wanted to let you know no matter how hard the struggle may be, you are doing an amazing job. Stand tall and stand firm. Love from all of us." - Parents of a child with CLOVES
"This is more fun than our own summer camp!" - Child with CLOVES
"The CLOVES conference was everything I hoped it would be and more. I met a team of brilliant Doctors that know more about my condition than anyone ever has in my 50 years of life. I was learning from them for once rather than trying to explain to them what I have. While this is a very complex condition, I feel as though I have a better understanding of the how's and why's now. I am thrilled to have found answers and a possibility of improving my medical situation and longevity. The team of Doctors/researchers is truly amazing. I also loved meeting the children with CLOVES and talking with their parents. I have the unique opportunity to be "older" and can hopefully help some of the children and parents recognize that although this is a huge obstacle at times, we really can enjoy life and go on to do the things that are important to us as individuals. I have so much admiration for the parents that are working hard to find answers for their children." - Adult with CLOVES Syndrome
"I made a new best friend here!" - Child with CLOVES
"Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we travelled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room. It's worth it for a connection that will help carry them through the hard times that come with CLOVES." - Mom of a child with CLOVES
****Any CLOVES family or person with CLOVES who needs a partial or full registration scholarship will be given one. Please email Kristen at firstname.lastname@example.org to attain the discount code for registration BEFORE registering****
Early Bird registration is $25 per adult and $10 per child from 11/19/18 - 1/20/19
Regular registration is available for $40 per adult and $20 per child from 1/21/19 - 4/1/19
LATE registration is available for $60 per adult and $30 per child from 4/2/19 - 4/26/19
Activities for Kids and Teens:
Activities for children ages 5-12 and teens will be provided by Zebra Crossings with support from Boston Children’s Hospital Child Life Services staff/volunteers. Children younger than 5 years of age must be with a caregiver/volunteer in the kids room. Please bring an additional adult, if need be, if you are bringing children younger than 5 years.
CLOVES Conference Hotel and Family Dinner:
Details coming soon!!