Matters of Heart: March 2019
Fundraising Thanks!!! #Hugsgiving
Brandy Williams pledged to spread the love by giving out a hug in response to anyone making at least a $5 donation to LDSF. She did this in honor of her beautiful daughter Lo who has LDS.
Brandy engaged over 100 people to donate to our foundation which was really putting herself out there since hugs are not the most comfortable thing for her! We saw hugs in hospitals, libraries and restaurants. You can check out Brandy's videos and pictures at https://www.facebook.com/hugsgiving.
Thank you Brandy for creating awareness and raising funds towards research, education and community!
Potluck: (see how easy it is!)
Stacey and Bruce put on an amazing fun filled potluck fundraiser and raised over $2,500. They invited their family and friends, had everyone bring a food dish or beverage, played a couple of our LDSF videos and had a great time while raising money for their favorite charity. Reach out to us if you are interested in having your own potluck fundraiser at info@loeysdietz.org
LDS: Did you know--Adult GI answers
Of the respondents to our Adult GI survey, 87% considered themselves to have some level of GI complications with 3/4 of these believing that these complications had a significant impact on their lives.
Those who experienced complications reported the most common complication is belching. Dysphagia (or difficulty swallowing solid food), loss of appetite, bloating and heartburn are also common issues associated. Diarrhea and urgent stools are common as are frequent solid stools. A third of respondents reported constipation in the previous 4 weeks.
Just over half of respondents have seen a Gastroenterologist and of those less than 50% had an abnormal endoscopy, while over 50% had abnormal colonoscopy results.
Largely, LDS patients do not have any official GI diagnoses. Of those with an official diagnosis, Irritable Bowel Syndrome (IBS) is the most common.
Two thirds of the respondents do not have any reported food allergies. For those that do, gluten, dairy and lactose are the most common.
Patients generally experience GI issues daily, or a few times a week.
Stress and offending food - spices, dairy, gluten, are the greatest irritants for GI issues. Eating a healthy diet, monitoring intake of offending foods, stool softeners and probiotics are reported helpful ways to manage GI issues.
--Do you have a suggestion for an LDS Did you know topic? Email the education committee at gretchen.maccarrick@loeysdietz.org.
Research opportunity: Patient attitudes to genome editing for prevention of heritable disorders: Social and Ethical Implications
Researchers at University College London are conducting a survey into the attitudes and beliefs surrounding embryo genome editing. They are interested in heritable disease communities as they believe that they have prior knowledge into reproductive technologies, such as preimplantation genetic diagnosis (PGD). Embryo genome editing using CRISPR technology could mean the alteration or removal of faulty genes which cause disease.
The survey is under 15 minutes long. They are looking for a range of individuals, age 18 or over, including those who have family members or are themselves affected by a condition, and also those that do not have a familial condition. The survey is compatible with both mobile phones and computers.
**Note, this survey does ask questions that may cause you to reflect on your ethical beliefs about embryos and technology, and thus may cause some distress**
Study link: https://ifwh.eu.qualtrics.com/jfe/form/SV_bmcR6HxNAcBE6aN
As well, if you have questions about the technologies referred to in this study check out these YouTube Videos: Preimplantation Genetic Screening-Genome Editing
Coming up...
This June, we will be launching our first LDS month; a month of awareness, community and fundraising!
On June 2nd we are kicking off the awareness month with the Chicagoland biannual LDS Block Party Extravaganza. It's a day of awareness, remembrance and fun featuring something for everyone! Outside of our conference, it's the biggest group event that is currently planned. Register today. More details to come over the next two months.
This April, we will also be making our 2018-2019 LDSF shirts available for purchase for delivery by LDS month. We can't wait to see all the LDS love and support around the world! Details on how to order will be revealed on our Facebook, Instagram and in an email in the next couple of weeks