Can you believe the conference is just over a week away!
Here are a few answers to the most common questions:
The entire three day event is free!
Friday’s Meet and Greet and Sunday’s Closing Ceremony will provide light dinners. Saturday Symposium at Texas Children’s will have breakfast and lunch.
Childcare is provided for Saturday’s symposium only. A huge thank you to Texas Children’s Hospital for offering trained staff to watch our children on Saturday. It is very unusual to have daycare provided at events like this. Friday’s Meet and Greet and Sunday’s Closing Ceremony will have a craft table with volunteers to help keep the kids busy, but they will not be responsible for caring for the children. Please keep an eye on your children during these events. The workshops on Sunday are for the adults only.
The Houston Marriott Medical Center provides a free shuttle for a two mile radius from the hotel. However, they do not provide a shuttle from either airport back to the hotel.
Please let us know if you have any questions. See you there!
Kathy Jensen and Lisa Soeby
This video blog was made by Carrie Fulcher in the UK. Thank you Carrie.
by Kathy Jensen
Today, I want to talk to the people that are still on the fence and offer some additional reasons you may want to attend the 2015 Hypothalamic Hamartoma Family Symposium. We want you to know that the symposium will be recorded and posted on the Hope for HH website as soon as it is available so that you will have access to all of the presentations even if you are not there. In that way, we are trying to reach as many people as we can and completely understand the time and financial burdens that affect everyone when it comes to travel. However, the symposium is only half of the story.
By attending, you have will the wonderful opportunity of talking with other families and patients with HH. Our physicians are amazing, but they do not live with HH, and thus don’t always understand all of the quirky traits that families experience living with it. I have been incredibly blessed with the chance to talk to a few of the families. I have learned to laugh with my son when he has a gelastic seizure so he does not feel sad because I am sad, that when […]
Continue reading Fun Fact Friday – Will You Be There?
by Carrie Fulcher
After our first fundraising event as Hope for HH UK I cannot stop thinking about how good it feels to be supported by such loving and caring people. All my friends and family have watched my journey struggling with a Hypothalamic Hamartoma. They have recognised how difficult the last couple of years have been for me since undergoing unnecessary surgery. I could have let my misdiagnosis get the better of me and for a while it did but I didn’t want this to be the case forever so I had to take control. There was no way I was going to let this unfortunate situation define who I am as a person.
I started to have an overwhelming feeling of wanting to make changes in the UK as currently there is a lack of knowledge about this condition. I wasn’t entirely sure of the direction I wanted to take but after teaming up with some amazing mums who have to watch their children battle with the condition I knew exactly what had to be done.
I watch Faith, a 7 year old little girl suffer daily with her seizures, precocious puberty and emotional difficulties. Also, […]
Continue reading Finally Feeling Complete
We are excited to bring you more news about the Hope for Hypothalamic Hamartomas Family Conference which will be held July 10-12 at
Texas Children’s Hospital – Pavilion for Women 6651 Main St Houston, TX 77030
Things to do while in Houston! Here are just a few things to do near the Medical Center-
Houston Museum of Natural Science
Museum of Fine Arts Houston
Children’s Museum of Houston
This site has the top 10 things to do around the Houston area-
Top 10 things to do in Houston
It will be hot and humid but there are plenty of indoor options. This is going to be an amazing weekend filled with fun, learning and friendship. Now is the time to sign up and reserve your hotel!
Let’s talk travel! The conference and hotel are in Houston at the Medical Center. This is located south and a little west of downtown Houston. This area contains over 18 hospitals in a very small area. There is almost a hospital on every block! For someone that has driven in both Phoenix and Seattle I felt the area was a little confusing and very busy. I have heard some from the east coast felt the area was normal traffic and not too difficult. All depends on your comfort level. The Marriott at Houston Medical Center offers a complimentary shuttle within a two mile radius. Texas Children’s Hospital and the Marriott have parking available for a fee.
If you are flying in, there are two choices depending on which airline you have booked with; Bush International Airport (IAH), 23 miles north, or Hobby (HOU), 14 miles east. You can take a taxi, super shuttle, or rent a car to get to the Medical Center area. Once you are there, you can walk to the conference from the hotel, one block away. If you prefer, inside bridges are available that will take a little longer, but keep you out of the heat.
Continue reading Family Conference Fun Fact Friday
Where to stay? We have a small block of rooms reserved at the Houston Marriott Medical Center for 81 USD a night. Friday and Sundays’ events will be at this hotel. The symposium is located just a block away at the Women’s Pavilion at Texas Children’s Hospital.
Please reserve your room soon. We may have the option to increase this block if needed depending on hotel availability, but the longer we wait the less likely they will be able to accommodate us. Some of the rooms have a pass through door so you may connect two rooms for larger families. These are also limited and you will need to contact the hotel itself at 713-796-0080 to check for availability.
The Marriott has two restaurants on site. They are also offering a discount coupon per person for the breakfast buffet at 15 USD for adults and10 USD for children.
For families that do not handle the heat well, there is a way to stay indoors, traveling through the sky bridges. It is a little longer walk, but I am sure it will be cooler. There is also an indoor pool to help cool you off and burn some of your children’s […]
Continue reading Family Conference Fun Fact Friday
by Ilene Miller
Some of you may wonder why I keep pushing for the Rare Epilepsy Network Registry (REN) so I wanted to share a more complete reply.
My son Mark who just turned 13 also has HH. He was diagnosed a age 5. I live in Bethesda, MD and am an attorney by training. My husband is a surgeon. We helped found Hope for HH with Lisa Soeby and others because until then there was no place to go for trustworthy medically accurate information about HH diagnosis. The foundation works with a board of Medial Advisors from around the world that specialize in HH.
One of the biggest issues we face in seeking treatment is that HH patients and doctors are dispersed around the world. It’s rare for a doctor, unless they are at a specialized center, to see and treat even one HH patient and even more rare for that doctor to see multiple HH patients. Thus, there is a great deal of variability in the treatment of HH patients. In addition, any lessons learned treating an individual patient is not as likely to be shared with other doctors. Questions such as: which surgeries are most successful? who […]
Continue reading Please Participate in the Rare Epilepsy Network (REN) Registry